Cited by 498Cystic Fibrosis Research AdvancesNursing care and researchChronic Obstructive Pulmonary Disease (COPD) Research

The DOI matches its Crossref record; 15 of the 15 references it cites were found in a registry or an index.

High treatment burden in adults with cystic fibrosis: Challenges to disease self-management

Open access

Sawicki, Gregory S., Sellers, Deborah E., Robinson, Walter M.·2009·Journal of Cystic Fibrosis

DOI 10.1016/j.jcf.2008.09.007PMC PMC2680350

Open this paper in CoChat — free account Open PDF

Abstract

Background More aggressive management of cystic fibrosis (CF), along with the use of new therapies, has led to increasing survival. Thus, the recommended daily treatment regimens for most CF adults are complex and time consuming. Methods In the Project on Adult Care in CF (PAC-CF), an ongoing longitudinal study of CF adults, we assessed self-reported daily treatment activities and perceived treatment burden as measured by the CF Questionnaire-Revised (CFQ-R), a disease-specific quality of life measure. Results Among the 204 respondents, the median number of daily therapies reported was 7 (IQR 5-9) and the mean reported time spent on treatment activities was 108 minutes per day (SD 58 minutes). Respondents reported a median of 3 inhaled and 3 oral therapies on the day prior to the survey. Only 49% reported performing airway clearance (ACT) on that day. There were no differences in the number of medications or the time to complete therapies based on gender, age or FEV1. The mean CFQ-R treatment burden domain score was 52.3 (SD 22.1), with no significant differences in the treatment burden based on age or FEV1. In a multivariable model controlling for age, gender, and FEV1, using 2 or more nebulized medications and performing ACT for ≥30 minutes were significantly associated with increased treatment burden. Conclusion The level of daily treatment activity is high for CF adults regardless of age or disease severity. Increasing number of nebulized therapies and increased ACT time, but not gender, age, or pulmonary function, is associated with higher perceived treatment burden. Efforts to assess the effects of high treatment burden on outcomes such as quality of life are warranted.

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

Integrity signals

Registry

Crossref · 10.1016/j.jcf.2008.09.007

Cites

15 of 15 references verified0 citation errors · 0 not checkable

Statistics

Claims the paper makes

The claims and statistics of this paper haven’t been checked yet.

Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.

Claims other papers make about this one

Each is checked against this paper’s own text: does it say what the citing paper says it does?

Self-check

Percentages, sums and reported differences re-computed from the paper’s own numbers.

The self-check needs the paper’s full text.

Update on Key Emerging Challenges in Cystic Fibrosis
Jennings, M. T., Riekert, K. A., & Boyle, M. (2014) · Medical Principles and Practice · doi:10.1159/000357646 · Cited by 3,671
Illness cognition: Using common sense to understand treatment adherence and affect cognition interactions
Leventhal, H., Diefenbach, M., & Leventhal, E. A. (1992) · Cognitive Therapy and Research · doi:10.1007/bf01173486 · Cited by 1,573
Cystic Fibrosis Pulmonary Guidelines
Flume, P. A., O'Sullivan, B. P., Robinson, K. A., Goss, C. H., Mogayzel, P. J., Willey‐Courand, D. B., Bujan, J., Finder, J. D., Lester, M., Quittell, L. M., et al. (2007) · American Journal of Respiratory and Critical Care Medicine · doi:10.1164/rccm.200705-664oc · Cited by 1,024
Predictive 5-year survivorship model of cystic fibrosis
Liou, T. G., Adler, F. R., FitzSimmons, S. C., Cahill, B. C., Hibbs, J. R., & Marshall, B. C. (2001) · American Journal of Epidemiology · doi:10.1093/aje/153.4.345 · Cited by 749
Mucus Clearance and Lung Function in Cystic Fibrosis with Hypertonic Saline
Donaldson, S. H., Bennett, W. D., Zeman, K. L., Knowles, M. R., Tarran, R., & Boucher, R. C. (2006) · New England Journal of Medicine · doi:10.1056/nejmoa043891 · Cited by 689
Cystic Fibrosis Adult Care
Yankaskas, J. R., Marshall, B. C., Sufian, B. S., Simon, R. H., & Rodman, D. M. (2004) · CHEST Journal · doi:10.1378/chest.125.1_suppl.1s · Cited by 574
Development and Validation of the Cystic Fibrosis Questionnaire in the United States
Quittner, A. L., Buu, A., Messer, M. A., Modi, A. C., & Watrous, M. L. (2005) · CHEST Journal · doi:10.1378/chest.128.4.2347 · Cited by 525
Barriers to Treatment Adherence for Children with Cystic Fibrosis and Asthma: What Gets in the Way?
Modi, A. C., & Quittner, A. L. (2006) · Journal of Pediatric Psychology · doi:10.1093/jpepsy/jsj096 · Cited by 301
Novel tobramycin inhalation powder in cystic fibrosis subjects: Pharmacokinetics and safety
Geller, D. E., Konstan, M. W., Smith, J. J., Noonberg, S. B., & Conrad, C. (2007) · Pediatric Pulmonology · doi:10.1002/ppul.20594 · Cited by 195
Determinants of adherence in adults with cystic fibrosis
Kettler, L. J. (2002) · Thorax · doi:10.1136/thorax.57.5.459 · Cited by 147

Flagged first, then by citations

Show all 15 references

Sorted by citations

Items 301–400 of 496

Assessment of factors and interventions towards therapeutic adherence among persons with non-cystic fibrosis bronchiectasis
Thornton, C. S., Somayaji, R., & Lim, R. K. (2022) · ERJ Open Research · doi:10.1183/23120541.00340-2022 · Cited by 6
Impact of CFTR modulator therapy on basic life needs and financial concerns in people with cystic fibrosis: Data from the Well-ME survey
Boas, H., Citters, A. D. V., Yu, E. L., King, J. R., Zagnit, E. A., Dieni, O., & Ren, C. L. (2025) · Journal of Cystic Fibrosis · doi:10.1016/j.jcf.2025.01.001 · Cited by 6
TREATMENT ADHERENCE AMONG CHILDREN AND ADOLESCENTS IN A CYSTIC FIBROSIS REFERENCE CENTER
Bonfim, B. S., Filho, V. M. D. M., Fontenelle, F. M., & Souza, E. L. (2020) · Revista Paulista de Pediatria · doi:10.1590/1984-0462/2020/38/2018338 · Cited by 7
Cystic Fibrosis Foundation Nebulizer and Compressor Accessibility Survey
Lester, M., Eidson, D., Blair, S., Gray, S., Sapp, P., Zupancic, F. J., Marshall, B. C., & Berlinski, A. (2021) · Respiratory Care · doi:10.4187/respcare.09197 · Cited by 6
Sex-related differences in self-reported treatment burden in patients with atrial fibrillation
Mihajlovic, M., Šimić, J., Marinković, M. M., Kovacevic, V., Kocijančić, A., Mujović, N. M., & Potpara, T. (2022) · Frontiers in Cardiovascular Medicine · doi:10.3389/fcvm.2022.1029730 · Cited by 6
Challenges and opportunities in the development of novel antimicrobial therapeutics for cystic fibrosis
Barton, T. E., Frost, F., Fothergill, J. L., & Neill, D. R. (2022) · Journal of Medical Microbiology · doi:10.1099/jmm.0.001643 · Cited by 5
Patient Perspectives on the Use of Digital Technology to Help Manage Cystic Fibrosis
Watanabe, A. H., Willis, C., Ragsdale, R., BISKUPIAK, J. E., Moore, K., Brixner, D. I., & Young, D. C. (2023) · Pulmonary Medicine · doi:10.1155/2023/5082499 · Cited by 6
Identifying and Integrating Parent Priorities for Psychosocial Support Services in a Pediatric Cystic Fibrosis Clinic
Everhart, R. S., Molitor, S. J., Wentz, D., Schmidt, H. J., & Schechter, M. S. (2018) · Journal of Clinical Psychology in Medical Settings · doi:10.1007/s10880-018-9588-1 · Cited by 6
The Salt without the Girl: Negotiating Embodied Identity as an Agender Person with Cystic Fibrosis
Nowakowski, A. C. H. (2019) · Social Sciences · doi:10.3390/socsci8030078 · Cited by 6
Elicitation interview study to identify salient beliefs about exercise participation in adults with cystic fibrosis
Dwyer, T., Griffin, B., Bye, P. T. P., & Alison, J. A. (2019) · Physiotherapy · doi:10.1016/j.physio.2019.10.004 · Cited by 6
A Comparison of Perceptions of Reassurance in Patients with Nontraumatic Neck Pain and Whiplash-Associated Disorders in Consultations with Primary Care Practitioners—An Online Survey
Guerrero, A. V. S., Setchell, J., Maujean, A., & Sterling, M. M. (2020) · Pain Medicine · doi:10.1093/pm/pnaa277 · Cited by 7
Steps Ahead: optimising physical activity in adults with cystic fibrosis: Study Protocol for a pilot randomised trial using wearable technology, goal setting and text message feedback.
Curran, M., Tierney, A. C., Collins, L., Kennedy, L., McDonnell, C., Jurascheck, A. J., Sheikhi, A., Walsh, C., Button, B., Galvin, R., et al. (2020) · HRB Open Research · doi:10.12688/hrbopenres.13025.3 · Cited by 6
Percussion Hero: A Chest Physical Therapy Game for People with Cystic Fibrosis and their Caregivers
Sadprasid, B., Eddy, E., Tabor, A., Scheme, E., & Bateman, S. (2021) · Annual Symposium on Computer-Human Interaction in Play · doi:10.1145/3450337.3483508 · Cited by 6
CF-CATS: An uncontrolled feasibility study of using tai chi for adults with cystic fibrosis
Lorenc, A., Mian, A., Madge, S. L., Carr, S. B., & Robinson, N. (2013) · European Journal of Integrative Medicine · doi:10.1016/j.eujim.2013.09.003 · Cited by 6
Using poetry to explore normalcy as a coping mechanism for young people with cystic fibrosis
MacDonald, K. (2017) · Journal of research in nursing · doi:10.1177/1744987117732615 · Cited by 6
Self-management for non-cystic fibrosis bronchiectasis
Kelly, C., Spencer, S., Grundy, S., Lynes, D., & Evans, D. J. (2017) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd012528 · Cited by 5
The application of the self-care deficit nursing theory in adolescents with cystic fibrosis: A randomized controlled study
Torun, T., Çavuşoğlu, H., & Doğru, D. (2024) · Journal of Pediatric Nursing · doi:10.1016/j.pedn.2024.03.011 · Cited by 5
Inhaled Mannitol (Bronchitol) for Cystic Fibrosis
Nevitt, S. J., Thornton, J., Murray, C. S., & Dwyer, T. (2015) · Paediatric Respiratory Reviews · doi:10.1016/j.prrv.2015.12.001 · Cited by 5
Development and validation of the Cystic Fibrosis Decisional Balance for Physical Activity scale (CF-DB-PA)
Filleul, V., Ladune, R., Gruet, M., Falzon, C., Fuchs, A., Mély, L., Hayotte, M., Vallier, J., Giovannetti, P., Ramel, S., et al. (2021) · BMC Pulmonary Medicine · doi:10.1186/s12890-021-01471-0 · Cited by 5
A Review of Treatments That Improve Cystic Fibrosis Transmembrane Conductance Regulator Function
Shanthikumar, S., & Massie, J. (2017) · Clinical Medicine Insights Therapeutics · doi:10.1177/1179559x17719123 · Cited by 5
Self-care at the margins of healthcare: ‘Malingering’ and ‘self-neglecting’ cystic fibrosis patients
Greenop, D., & Glenn, S. M. (2013) · Qualitative Social Work · doi:10.1177/1473325013479392 · Cited by 5
Transforming Care Models in Cystic Fibrosis: A Review
Diener, B. L., Berdella, M. N., DeCelie-Germana, J., Stables-Carney, T., & Kier, C. (2025) · Healthcare · doi:10.3390/healthcare13233022 · Cited by 4
“I am happy to be alive, but I prefer to have children without my chronic disease”: chronically ill persons’ views on reproduction and genetic testing for their own condition
König, A., & Reinsch, S. (2024) · New Genetics and Society · doi:10.1080/14636778.2024.2332299 · Cited by 4
Impact of sinus surgery in people with cystic fibrosis and chronic rhinosinusitis in the era of highly effective modulator therapy: Protocol for a prospective observational study
Liu, C. M., Fischer, J. L., Alt, J. A., Bodner, T., Chowdhury, N. I., Getz, A. E., Hwang, P. H., Kimple, A. J., Mace, J. C., Smith, T. L., et al. (2024) · PLoS ONE · doi:10.1371/journal.pone.0310986 · Cited by 4
Predictors of frequency of CF care in the US Cystic Fibrosis Foundation Patient Registry
Hinton, A. C., Sears, E. H., Zuckerman, J. B., & López‐Pintado, S. (2024) · PLoS ONE · doi:10.1371/journal.pone.0313510 · Cited by 4
Investigating the Interplay Between Having Cystic Fibrosis and Being a Member of the LGBTQIA+ Community: Protocol for the PRIDE CF Study
Kazmerski, T. M., Kidd, K. M., Jain, R., Jathal, I., Stransky, O. M., Lee, M., Salyer, R. E., Tangpricha, V., Palla, J. B., Alpern, A. N., et al. (2025) · Pediatric Pulmonology · doi:10.1002/ppul.71154 · Cited by 4
Self-citation
Safety, feasibility and efficacy of exercise as an airway clearance technique in cystic fibrosis: a randomised pilot feasibility trial
Urquhart, D. S., Taylor, E., Cunningham, S., Lewis, S. C., Neilson, A. R., Soilemezi, D., Ensor, H., Vogiatzis, I., Allen, L. J., & SAYNOR, Z. L. (2025) · Thorax · doi:10.1136/thorax-2025-223080 · Cited by 4
The Prognosis of Cystic Fibrosis - A Clinician's Perspective
Lebecque, P. (2012) · InTech eBooks · doi:10.5772/30660 · Cited by 4
Question 10: Could the Burden of Care with Cystic Fibrosis Impact on Educational Outcomes?
Hanxhiu, A., McKay, K., Singh‐Grewal, D., & Fitzgerald, D. A. (2016) · Paediatric Respiratory Reviews · doi:10.1016/j.prrv.2016.06.013 · Cited by 4
Cough suppression and HRQoL in adult people with cystic fibrosis: an unexplored correlation
Niehammer, U., Steindor, M., Straßburg, S., Sutharsan, S., Taube, C., Welsner, M., Hirtz, R., & Stehling, F. (2022) · Health and Quality of Life Outcomes · doi:10.1186/s12955-022-02053-2 · Cited by 4
“I think most people feel like healthcare professionals tell them to take their treatments and judge them for not taking them”: reflexive thematic analysis of the views of adults with cystic fibrosis on how treatment adherence is discussed in healthcare
Dawson, S., Rodham, K., Taylor, J. H., Dewar, J. C., & Wildman, M. J. (2023) · Psychology and Health · doi:10.1080/08870446.2023.2254318 · Cited by 5
Chronic Rhinosinusitis with Nasal Polyposis in People with Cystic Fibrosis
Miller, J. E., Taylor‐Cousar, J. L., & Beswick, D. M. (2023) · Sinusitis · doi:10.3390/sinusitis7020004 · Cited by 4
Improving health literacy of antibiotic use in people with cystic fibrosis (CF)—comparison of the readability of patient information leaflets (PILs) from the EU, USA and UK of 23 CF-related antibiotics used in the treatment of CF respiratory infections
Tang, K. W. K., Millar, B. C., & Moore, J. E. (2023) · JAC-Antimicrobial Resistance · doi:10.1093/jacamr/dlad129 · Cited by 5
Potential of pharmacogenetics in minimizing drug therapy problems in cystic fibrosis
Chhibber, A., Watanabe, A. H., Jacobs, H., Kharat, A. A., Syeed, M. S., Sherwin, C. M. T., Chaiyakunapruk, N., BISKUPIAK, J. E., Yellepeddi, V., Brixner, D. I., et al. (2024) · Journal of Cystic Fibrosis · doi:10.1016/j.jcf.2024.06.006 · Cited by 4
Elexacaftor/tezacaftor/ivacaftor, a game-changer in cystic fibrosis: The Portuguese experience
FRAGOSO, E. C., Boaventura, R. D. P., Almeida, L., Amorim, A. A., Gamboa, F., Santos, A. S., Gonçalves, F., Cruz, C. M., Carreiro, A., Gonçalves, A. S., et al. (2024) · Pulmonary Pharmacology & Therapeutics · doi:10.1016/j.pupt.2024.102328 · Cited by 4
Polypharmacy in Older Patients with Multimorbidity: The Agreement Between Patient and General Practitioner-Reported Drugs Observed in a Pilot cRCT
Schäfer, L., Paulitsch, M., Hanf, M., Dinh, T. S., Klein, A.-A., Klasing, S., Seidling, H. M., Voigt, K., & van den Akker, M. (2024) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph21101389 · Cited by 4
Personalised medicine in cystic fibrosis must be made affordable
Bilton, D. (2014) · Paediatric Respiratory Reviews · doi:10.1016/j.prrv.2014.04.004 · Cited by 4
Effects of high intensity interval training on exercise capacity in people with cystic fibrosis: study protocol for a randomised controlled trial
Sawyer, A., Cavalheri, V., JENKINS, S. C., Wood, J., Cecins, N. M., Singh, B., & Hill, K. (2018) · BMC Sports Science Medicine and Rehabilitation · doi:10.1186/s13102-018-0108-2 · Cited by 4
Assessing Practices, Beliefs, and Attitudes about Palliative Care among People with Cystic Fibrosis, Their Caregivers, and Clinicians: Results of a Content Analysis
Basile, M. J., Jojan, L., Hobler, M. R., Dellon, E. P., Georgiopoulos, A. M., Goggin, J. L., Chen, E. Y., Goss, C. H., Hempstead, S. E., Faro, A., et al. (2021) · Journal of Palliative Medicine · doi:10.1089/jpm.2020.0725 · Cited by 4
The associations between pediatric weight status and cystic fibrosis‐related diabetes status and health‐related quality of life among children and young adults with cystic fibrosis: A systematic review
Gomes, A., Patusco, R., Chung, M. C., Dreker, M. R., Byham-Gray, L. D., Lapin, C. D., & Ziegler, J. (2021) · Pediatric Pulmonology · doi:10.1002/ppul.25463 · Cited by 4
Exploring the challenges of accessing medication for patients with cystic fibrosis
Herbert, S., Rowbotham, N. J., Smith, S. J., Wilson, P., Elliott, Z. C., Leighton, P. A., Duff, A., & Smyth, A. R. (2021) · Thorax · doi:10.1136/thoraxjnl-2021-217140 · Cited by 4
Now What? Collective Sensemaking and Sensegiving in the Cystic Fibrosis Community in Sweden During the Initial Phase of the COVID-19 Pandemic
Wannheden, C., Hasson, H., Hager, A., Karlgren, K., & Härenstam, K. P. (2022) · Health Communication · doi:10.1080/10410236.2022.2134705 · Cited by 6
Emerging Approaches to Monitor and Modify Care in the era of CFTR Modulators
Britto, C. J., Ratjen, F. A., & Clancy, J. P. (2022) · Clinics in Chest Medicine · doi:10.1016/j.ccm.2022.06.006 · Cited by 4
A Participatory Approach Involving Patients with Cystic Fibrosis and Healthcare Professionals for the Co-Design of an Adherence-Enhancing Intervention Toolkit
Viprey, M., Mougeot, F., Dima, A. L., Haesebaert, J., Occelli, P., Durieu, I., Rouzé, H., Reynaud, Q., & Touzet, S. (2023) · Patient Preference and Adherence · doi:10.2147/ppa.s389792 · Cited by 4
Les défis de l’observance dans les maladies chroniques
Reach, G. (2018) · Médecine des Maladies Métaboliques · doi:10.1016/s1957-2557(18)30135-4 · Cited by 4
Interventions for improving adherence to airway clearance treatment and exercise in people with cystic fibrosis
Jones, M., Moffatt, F., Harvey, A., & Ryan, J. M. (2020) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd013610 · Cited by 4
Cystic fibrosis and the relevance of the whole-body vibration exercises in oscillating platforms: a short review
Maiworm, A. I., Monteiro, M. D. O. B., Santos-Filho, S. D., Lopes, A. J., de Azeredo, L. M., Missailidis, S., Marin, P. J., & Bernardo-Filho, M. (2011) · Health · doi:10.4236/health.2011.310110 · Cited by 4
Psychosocial Adaptation and Adherence Among Adults With CF
Findler, L., Shalev, K., & Barak, A. (2013) · Rehabilitation Counseling Bulletin · doi:10.1177/0034355213495922 · Cited by 4
Cystic Fibrosis
Williams, R. M., & Barker, H. C. (2010) · InnovAiT Education and inspiration for general practice · doi:10.1093/innovait/inq072 · Cited by 4
Treatment complexity in cystic fibrosis (CF): An increasing multifaceted challenge
Phan, H. (2018) · Pediatric Pulmonology · doi:10.1002/ppul.24061 · Cited by 4
Real-World Impact of Elexacaftor/Tezacaftor/Ivacaftor (ELX/TEZ/IVA) in Italy: A Retrospective Study from a Cystic Fibrosis Center
Cipolli, M., Thorat, T., Pafundi, P. C., Roggeri, A., Roggeri, D. P., Rossi, C., Pintani, E., Meneghelli, I., Lucca, F., Fratoni, A., et al. (2025) · Pulmonary Therapy · doi:10.1007/s41030-025-00334-x · Cited by 3
Introducing a MAP for adherence care in the paediatric cystic fibrosis clinic: a multiple methods implementation study
Richards, B., Osborne, S. R., & Simons, M. (2022) · BMC Health Services Research · doi:10.1186/s12913-021-07373-5 · Cited by 3
Psychosocial evaluation in adults with cystic fibrosis-related diabetes: A cross-sectional study
Kumar, S., Pallin, M., & Soldatos, G. (2022) · Journal of Psychosomatic Research · doi:10.1016/j.jpsychores.2022.111115 · Cited by 3
Antimicrobial Strategies for Cystic Fibrosis
Møller, R., Pressler, T., & Qvist, T. (2022) · Seminars in Respiratory and Critical Care Medicine · doi:10.1055/s-0042-1758733 · Cited by 3
Codevelopment of a model of care for adults living with cystic fibrosis‐related diabetes
Kumar, S., Pallin, M., & Soldatos, G. (2024) · Pediatric Pulmonology · doi:10.1002/ppul.27047 · Cited by 3
A Patient-Driven Mobile Health Innovation in Cystic Fibrosis Care: Comparative Cross-Case Study
Mazzocato, P., Luckhaus, J. L., Castillo, M. M., Burnett, J., Hager, A., Oates, G. R., Wannheden, C., & Savage, C. (2024) · Journal of Medical Internet Research · doi:10.2196/50527 · Cited by 3
Tolerability and Pharmacokinetic Evaluation of Inhaled Dry Powder Tobramycin in Children with Cystic Fibrosis
Akkerman‐Nijland, A. M., Hagedoorn, P., Rottier, B. L., Grasmeijer, F., Frijlink, H. W., van Luin, M., ter Weijden, E., Merkus, P. J. F. M., Touw, D. J., Akkerman, O. W., et al. (2025) · Pharmaceutics · doi:10.3390/pharmaceutics17030347 · Cited by 3
Parents as equal partners in the paediatric cystic fibrosis multidisciplinary team
Bryon, M., & Wallis, C. (2011) · Journal of the Royal Society of Medicine · doi:10.1258/jrsm.2011.s11105 · Cited by 3
Rapid lung function decline in adults with early-stage cystic fibrosis lung disease
Dasenbrook, E. C., Fink, A. K., Schechter, M. S., Sanders, D. B., Millar, S. J., Pasta, D. J., & Mayer-Hamblett, N. (2019) · Journal of Cystic Fibrosis · doi:10.1016/j.jcf.2019.12.005 · Cited by 3
Palliative Care in Pediatric Pulmonology
Baumann, T., Das, S., Jarrell, J. A., Nakashima-Paniagua, Y., Benitez, E. A., Gazzaneo, M. C., & Villafranco, N. M. (2021) · Children · doi:10.3390/children8090802 · Cited by 3
Delivery of cystic fibrosis psychosocial care across developmental stages
Lynn, C., Lyons, E. R., & Muther, E. (2021) · Children s Health Care · doi:10.1080/02739615.2021.1993228 · Cited by 3
Chronic daily respiratory care needs in people with cystic fibrosis treated with highly effective cystic fibrosis transmembrane conductance regulator modulators
Wajda, K. E., Roesch, E. A., & Gifford, A. H. (2023) · Current Opinion in Pulmonary Medicine · doi:10.1097/mcp.0000000000001006 · Cited by 3
Medication use in people with cystic fibrosis before and after modulator therapy
Lord, L., Hew, M. J., Leung, M. T. Y., Morton, J. I., & Ilomäki, J. (2023) · Pulmonary Pharmacology & Therapeutics · doi:10.1016/j.pupt.2023.102264 · Cited by 3
Working to Have a Normal Life With Cystic Fibrosis in an Adherence-Driven Health Care System
Macdonald, M., Lang, A., Savage, E., Chappe, V. M., Murphy, A. L., Gosse, F., & MacLean, H. J. (2019) · Respiratory Care · doi:10.4187/respcare.06493 · Cited by 3
Interventions for improving adherence to treatment in cystic fibrosis
Jones, S., Curley, R., Wildman, M. J., Morton, R., & Elphick, H. (2015) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd011665 · Cited by 3
Retracted
Healthcare Provider Acceptability of a Behavioral Intervention to Promote Adherence
McLean, K. A. (2013) · Cited by 3
Home-based Inspiratory Muscle Training In Adults With Cystic Fibrosis: A Case Series Report
Dekerlegand, R. L., Hadjiliadis, D., Myslinski, M. J., Holsclaw, D. S., & Ferrin, M. (2014) · Cardiopulmonary Physical Therapy Journal · doi:10.1097/01823246-201409000-00004 · Cited by 3
Mannitol therapy for children with cystic fibrosis: efficacy and safety
Simonova, O. I., Gorinova, Y. V., Высоколова, О. В., Mukhina, M. A., & Евгеньевна, Я. Е. (2022) · Meditsinskiy sovet = Medical Council · doi:10.21518/2079-701x-2022-16-18-56-63 · Cited by 3
Airway clearance after highly effective CFTR modulators: Normalizing life and reducing treatment burden
Goetz, D., Frederick, C., Pérez, G. F., & Borowitz, D. (2023) · Pediatric Pulmonology · doi:10.1002/ppul.26502 · Cited by 5
Reducing Treatment Burden in Cystic Fibrosis: Is There a Risk to OverSIMPLIFYing Therapies?
Quon, B. S. (2024) · Annals of the American Thoracic Society · doi:10.1513/annalsats.202407-694ed · Cited by 3
Optimising outcomes for adults with cystic fibrosis taking CFTR modulators by individualising care: Personalised data linkage to understand treatment optimisation (PLUTO), a novel clinical framework
Sandler, R. D., Anderson, A. J. B., Barnett, T., Bourke, S., Cameron, S., Chapman, S. J., Choyce, J., Daniels, T. W. V., Daniels, T. E., Dawson, S., et al. (2025) · Respiratory Medicine · doi:10.1016/j.rmed.2025.107995 · Cited by 2
Real-world outcomes after initiation of Elexacaftor/tezacaftor/ivacaftor in an adolescent cohort with cystic fibrosis
Johnston, J. R., Donnelley, M., Smith, R., Louise, J., Grunert, J., Vanda, C. L., & Tai, A. (2025) · Respiratory Medicine · doi:10.1016/j.rmed.2025.108410 · Cited by 2
Assessing the efficacy, safety and utility of hybrid closed-loop glucose control compared with standard insulin therapy combined with continuous glucose monitoring in young people (≥16 years) and adults with cystic fibrosis-related diabetes (CL4P-CF study): protocol for an open-label, multicentre, randomised, two-arm and single-period parallel trial
Kadiyala, N., Coleman, R. L., Lakshman, R., Wilinska, M. E., Brennan, A., Lumb, A. N., Holt, R. I. G., Lau, D., Yajnik, P., Cheah, Y., et al. (2025) · BMJ Open · doi:10.1136/bmjopen-2025-111408 · Cited by 2
In Vitro and In Vivo Evaluation of the Combination of Oscillating Positive Expiratory Pressure and Nebulization: A Randomized Cross-Over Study
Reychler, G., Leal, T., Aubriot, A.-S., & Liistro, G. (2017) · Archivos de Bronconeumología · doi:10.1016/j.arbres.2017.04.011 · Cited by 2
“What Are the Applications for Remote Rehabilitation Management in Cystic Fibrosis?”: A Scoping Review Protocol
Marchis, M. D., Cioeta, M., & Cannataro, M. (2022) · International Journal of Environmental Research and Public Health · doi:10.3390/ijerph192114014 · Cited by 2
The Weariness of Hoping: Synchronizing Affect While Awaiting Organ Transplantation for Cystic Fibrosis in Germany
Reinsch, S., Niewöhner, J., & Schwarz, C. (2023) · Medical Anthropology · doi:10.1080/01459740.2023.2240946 · Cited by 2
Preclinical Investigation of a Lipoglycopeptide Dry Powder Inhalation Therapy for the Treatment of Pulmonary MRSA Infection
Konicek, D. M., Plaunt, A. J., Gharse, S., Rose, S. J., Dorfman, A., Sabnis, A., Baker, T. G., Gauani, H., Chun, D., Li, Z., et al. (2023) · Pharmaceutics · doi:10.3390/pharmaceutics15092250 · Cited by 2
Transcending Limitations: A Phenomenological Exploration of How Hygge Practices Enrich the Lived Experiences of Adults with Cystic Fibrosis
Pitts, L. N., Woods, B. M., Polen, M., Nichols, L. S., & Ladores, S. (2024) · Creative Nursing · doi:10.1177/10784535241228522 · Cited by 2
Counterpoint: Too little care or too little collaboration: Approaches to treatment refusal in CF
Sawicki, G. S., & Riekert, K. A. (2017) · Journal of Cystic Fibrosis · doi:10.1016/j.jcf.2017.02.005 · Cited by 2
Self-citation
Automatic referrals within a cystic fibrosis multidisciplinary clinic improve patient evaluation and management
Darukhanavala, A. P., & Kremer, T. M. (2021) · Journal of Clinical & Translational Endocrinology · doi:10.1016/j.jcte.2021.100259 · Cited by 2
Symposium Summaries
(2019) · Pediatric Pulmonology · doi:10.1002/ppul.22494 · Cited by 1
Kidney and combined kidney and pancreas transplantation may be under-utilized in cystic fibrosis
Woywodt, A., Dhanda, R., van Dellen, D., So, B., & Bright-Thomas, R. J. (2022) · Frontiers in Transplantation · doi:10.3389/frtra.2022.992985 · Cited by 2
Associations between treatment burden, self-reported treatment qualities, antiretroviral therapy obtainment, and health-related quality of life among Ugandan PLWH
Guan, M., & Guan, H. (2023) · Cost Effectiveness and Resource Allocation · doi:10.1186/s12962-023-00434-y · Cited by 2
Assessing the Perceptions of Inspiratory Muscle Training in Children With Cystic Fibrosis and Their Multidisciplinary Team: Mixed-Methods Study
McCreery, J. L., Mackintosh, K. A., Cox, N. S., & McNarry, M. A. (2018) · JMIR Pediatrics and Parenting · doi:10.2196/11189 · Cited by 2
Understanding Treatment Adherence in Cystic Fibrosis: Challenges and Opportunities
Muther, E., Butcher, J. L., & Riekert, K. A. (2020) · Respiratory medicine · doi:10.1007/978-3-030-42382-7_22 · Cited by 2
Cystic Fibrosis-Related Diabetes (CFRD)
Ballmann, M. (2020) · IntechOpen eBooks · doi:10.5772/intechopen.92767 · Cited by 2
Children with Special Health Care Needs: Comparison of the Effects of Home Care Setting, Prescribed Pediatric Extended Care Setting, and Long-Term Care Setting on Child and Family Health Outcomes and Health Care Service Use
Caicedo, C. (2013) · doi:10.25148/etd.fi13042303 · Cited by 2
Quality over quantity: the next ACT in airway clearance in cystic fibrosis
Morrison, L., & Thornton, C. S. (2023) · European Respiratory Journal · doi:10.1183/13993003.01354-2023 · Cited by 2
Virtual monitoring in CF – the importance of continuous monitoring in a multi-organ chronic condition
Vagg, T., Deasy, K. F., Chapman, W. W., Ranganathan, S. C., Plant, B. J., & Shanthikumar, S. (2023) · Frontiers in Digital Health · doi:10.3389/fdgth.2023.1196442 · Cited by 1
A scoping review of clinical pharmacist and pharmacy technician contributions to cystic fibrosis care
Kim, A. S., Thompson, A., Axon, D. R., Sabourin, A. A., Davies, M. J., Shannon, C., Nasr, S. Z., & Phan, H. (2023) · JACCP JOURNAL OF THE AMERICAN COLLEGE OF CLINICAL PHARMACY · doi:10.1002/jac5.1877 · Cited by 1
“If You Have CF, I Will Eat My Shoe”: Lived experiences and needs of individuals with adult-diagnosed cystic fibrosis
Dollimount, A., Ram, M., Caissie, D. M., Power, H. A., McKay, C., Afseth, N., Genoe, M. R., Switzer, H., Tam, J. S., & Wright, K. D. (2024) · Canadian Journal of Respiratory Critical Care and Sleep Medicine · doi:10.1080/24745332.2024.2312149 · Cited by 1
Barriers and enablers to deprescribing for people living with cystic fibrosis: Multidisciplinary perspectives
Lord, L., Langford, A. V., Wang, T., Shaw, G., Ilomäki, J., Reeve, E., & Turner, J. P. (2025) · Respiratory Medicine · doi:10.1016/j.rmed.2025.108091 · Cited by 1
Physical well-being and burden of care in adults on modulator therapy: A mixed methods study of patient-reported experiences from the Well-ME survey
Brown, C. D., Frederick, C., Yu, E. L., Zagnit, E. A., King, J. R., & Citters, A. D. V. (2025) · Journal of Cystic Fibrosis · doi:10.1016/j.jcf.2025.04.010 · Cited by 1
Developing a framework for clinical conversations using a qualitative analysis of the patient experience of SIMPLIFY
Maggs, J., Sweeney, L., Pucci, A., McWilliams, E., Yablon, D., Ertman, B., Butcher, J. L., Everhart, R. S., Siracusa, C. M., Gifford, A. H., et al. (2025) · Patient Education and Counseling · doi:10.1016/j.pec.2025.109183 · Cited by 1
Self-citation
Temporal Relationship Between Treatment Burden and Self-Care and Its Impact on Systolic Blood Pressure and Hypertension Control
Jia, Z., Niu, Z., Xie, Y. J., Su, Z., Wang, J. J., Hernández, J., Li, Y., & Wang, H. (2025) · International Journal of General Medicine · doi:10.2147/ijgm.s517281 · Cited by 1
Transition Readiness of Pediatric Sickle Cell Patients to Adult Clinic in a Teaching Hospital, Ghana
Nartey, A. K., Paintsil, V., Nyanor, I., Oppong–Mensah, Y. G., Amuzu, E. X., Ahmed, E. A., Abubakar, S. Y., & Osei‐Akoto, A. (2025) · Advances in Hematology · doi:10.1155/ah/2843974 · Cited by 1
Exploring treatment burden and its mediating role between comorbidities and health related quality of life among older patients with COPD
Sönmez, S., & Top, M. (2025) · Geriatric Nursing · doi:10.1016/j.gerinurse.2025.103686 · Cited by 2
Exploring Exercise as Airway Clearance in Cystic Fibrosis: A Qualitative Study From the ExACT‐CF Feasibility Trial
Taylor, E. L., Soilemezi, D., Urquhart, D. S., Cunningham, S., Lewis, S. C., Neilson, A. R., Ensor, H., Vogiatzis, I., Allen, L. J., SAYNOR, Z. L., et al. (2026) · Pediatric Pulmonology · doi:10.1002/ppul.71470 · Cited by 1
The Impact of Cystic Fibrosis‐Related Diabetes on Barriers to Self‐Management
VITALE, R. J., Ford, C., Filigno, S. S., Sweeney, L., Snell, C., Putman, M. S., Rai, S., & Riekert, K. A. (2026) · Pediatric Pulmonology · doi:10.1002/ppul.71661 · Cited by 1
Advancing Cystic Fibrosis-Related Diabetes Care With Automated Insulin Delivery Systems
Grancini, V., Alicandro, G., Cogliati, I., Oliverio, A., Zazzeron, L., Gaglio, A., Gramegna, A., Daccò, V., Mantovani, G., Blasi, F., et al. (2026) · Clinical Therapeutics · doi:10.1016/j.clinthera.2026.05.011 · Cited by 1

Authors: Sawicki, G. S., Sellers, D. E., & Robinson, W. M.
Affiliations: Boston Children's Hospital (US)
Education Development Center (US)
Corresponding author: Sawicki, Gregory S.
ORCID: Sawicki, Gregory S.
Sellers, Deborah E.
Venue: Journal of Cystic Fibrosis
Publisher: Elsevier BV
Published: 2009-03
Volume: 8
Issue: 2
Pages: 91-96
ISSN: 1569-1993 (ISSN-L)
DOI: 10.1016/j.jcf.2008.09.007
PMC: PMC2680350
OpenAlex: W1976264709
Semantic Scholar: 6f4fe4eb5aa680de9ed1e2a38ba023699f8c2d53
Cited by: 498
References: 15
Citations by year: 2026: 15 · 2025: 25 · 2024: 29 · 2023: 41 · 2022: 46 · 2021: 32 · 2020: 35 · 2019: 35 · 2018: 30 · 2017: 39 · 2016: 25 · 2015: 37 · 2014: 29 · 2013: 23 · 2012: 15
FWCI: 12.29
Type: journal article
Language: en
Open access: bronze
doi.org
Licence: www.elsevier.com/tdm/userlicense/1.0/ (tdm)
www.elsevier.com/open-access/userlicense/1.0/ (vor, 1598 d)
Locations: Journal of Cystic Fibrosis (publishedVersion)
PubMed (publishedVersion)
PubMed Central (acceptedVersion)
Funders: National Heart, Lung, and Blood Institute (R01 HL72938, R01HL072938)
Topics: Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Cystic Fibrosis Research Advances
Health Sciences › Nursing › Research and Theory › Nursing care and research
Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Chronic Obstructive Pulmonary Disease (COPD) Research
Keywords: treatment burden, disease self-management, adults with cystic fibrosis, airway clearance, quality of life, lung function
MeSH terms: Adult, Age Factors, Cystic Fibrosis, Female, Humans, Longitudinal Studies, Male, Quality of Life, Surveys and Questionnaires, Respiratory Therapy, Self Care, Severity of Illness Index, Cost of Illness

About these checks

Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.

Statistics and arithmetic are recomputed, not judged.

Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.

What counts as a claim ›How we measure confidence ›How we check this ›

Are you an author, or do you see a problem with this page? Request a review

High treatment burden in adults with cystic fibrosis: Challenges to disease self-management

Abstract

Overview

Integrity signals

Verification

Claims the paper makes

Claims other papers make about this one

Self-check

Citations

Cites

Cited by

Related

Metadata

Record

About these checks