Accurate reporting of adherence to inhaled therapies in adults with cystic fibrosis: methods to calculate “normative adherence”
Open accessAbstract
BACKGROUND: Preventative inhaled treatments in cystic fibrosis will only be effective in maintaining lung health if used appropriately. An accurate adherence index should therefore reflect treatment effectiveness, but the standard method of reporting adherence, that is, as a percentage of the agreed regimen between clinicians and people with cystic fibrosis, does not account for the appropriateness of the treatment regimen. We describe two different indices of inhaled therapy adherence for adults with cystic fibrosis which take into account effectiveness, that is, "simple" and "sophisticated" normative adherence. METHODS TO CALCULATE NORMATIVE ADHERENCE: Denominator adjustment involves fixing a minimum appropriate value based on the recommended therapy given a person's characteristics. For simple normative adherence, the denominator is determined by the person's Pseudomonas status. For sophisticated normative adherence, the denominator is determined by the person's Pseudomonas status and history of pulmonary exacerbations over the previous year. Numerator adjustment involves capping the daily maximum inhaled therapy use at 100% so that medication overuse does not artificially inflate the adherence level. THREE ILLUSTRATIVE CASES: Case A is an example of inhaled therapy under prescription based on Pseudomonas status resulting in lower simple normative adherence compared to unadjusted adherence. Case B is an example of inhaled therapy under-prescription based on previous exacerbation history resulting in lower sophisticated normative adherence compared to unadjusted adherence and simple normative adherence. Case C is an example of nebulizer overuse exaggerating the magnitude of unadjusted adherence. CONCLUSION: Different methods of reporting adherence can result in different magnitudes of adherence. We have proposed two methods of standardizing the calculation of adherence which should better reflect treatment effectiveness. The value of these indices can be tested empirically in clinical trials in which there is careful definition of treatment regimens related to key patient characteristics, alongside accurate measurement of health outcomes.
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A minimum of one to three nebulised treatments per day are usually prescribed for people with CF, depending on individual characteristics, with treatments taking an average of 41 minutes per day.
“A minimum of one to three nebulised treatments per day are usually prescribed, depending on an individual's characteristics (Hoo 2016), with treatments taking an average of 41 minutes per day (Sawicki 2009).”
From Psychological interventions for improving adherence to inhaled therapies in people with cystic fibrosis (2023) · cites this paper as Hoo 2016
The ‘Simple normative adherence’ section says adults with CF should receive at least one inhaled therapy daily, or three if chronically colonized with Pseudomonas. This supports the prescribed range and its dependence on individual characteristics, but the cited recommendation is framed for adults, whereas the claim says people with CF generally. The 41-minute figure is attributed to Sawicki, not Hoo, and is not assessed here. (LLM, conf=0.83)
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Willsie, S. K. (2010) · Yearbook of Pulmonary Disease · doi:10.1016/s8756-3452(09)79349-1 · Cited by 2 · see citing works
Flagged first, then by citations
Research works printed but not linked: 2
- [2]Hoo ZH Wildman MJ Teare MD Exploration of the impact of ‘mild phenotypes’ on median age at death in the U.K. CF registry Respir Med 2014 108 5 716 721 24675238
- [51]Lee TW Brownlee KG Conway SP Denton M Littlewood JM Evaluation of a new definition for chronic Pseudomonas aeruginosa infection in cystic fibrosis patients J Cyst Fibros 2003 2 1 29 34 15463843
Cited by
Sorted by citations
Voytek, T. M., Ro, J. Y., Edeiken, J., & Ayala, A. G. (1995) · The American Journal of Surgical Pathology · doi:10.1097/00000478-199507000-00005 · Cited by 107 · see citing works
Wildman, M. J., O’Cathain, A., Maguire, C., Arden, M. A., Hutchings, M., Bradley, J., Walters, S. J., Whelan, P., Ainsworth, J., Buchan, I., et al. (2022) · Thorax · doi:10.1136/thoraxjnl-2021-217594 · Cited by 54 · see citing works
Self-citationArden, M. A., Hutchings, M., Whelan, P., Drabble, S. J., Beever, D., Bradley, J. M., Hind, D., Ainsworth, J., Maguire, C., Cantrill, H., et al. (2021) · Pilot and Feasibility Studies · doi:10.1186/s40814-020-00739-2 · Cited by 44 · see citing works
Self-citationSupporting medication adherence for adults with cystic fibrosis: a randomised feasibility study
Hind, D., Drabble, S. J., Arden, M. A., Mandefield, L., Waterhouse, S., Maguire, C., Cantrill, H., Robinson, L., Beever, D., Scott, A. J., et al. (2019) · BMC Pulmonary Medicine · doi:10.1186/s12890-019-0834-6 · Cited by 39 · see citing works
Self-citationRole of habit in treatment adherence among adults with cystic fibrosis
Hoo, Z. H., Gardner, B., Arden, M. A., Waterhouse, S., Walters, S. J., Campbell, M. J., Hind, D., Maguire, C., Dewar, J. C., & Wildman, M. J. (2018) · Thorax · doi:10.1136/thoraxjnl-2017-211453 · Cited by 39 · see citing works
Self-citationHoo, Z. H., Edenborough, F. P., Curley, R., Prtak, L., Dewar, J. C., Allenby, M. I., Nightingale, J. A., & Wildman, M. J. (2018) · European Journal of Clinical Microbiology & Infectious Diseases · doi:10.1007/s10096-017-3168-4 · Cited by 26 · see citing works
Self-citationThee, S., Stahl, M., Fischer, R., Sutharsan, S., Ballmann, M., Müller, A., Lorenz, D., Urbanski-Rini, D., Püschner, F., Amelung, V. E., et al. (2021) · BMC Pulmonary Medicine · doi:10.1186/s12890-021-01500-y · Cited by 25 · see citing works
Tappenden, P., Sadler, S., & Wildman, M. J. (2017) · PharmacoEconomics · doi:10.1007/s40273-017-0500-x · Cited by 24 · see citing works
Self-citationHoo, Z. H., Boote, J., Wildman, M. J., Campbell, M. J., & Gardner, B. (2017) · Health Psychology and Behavioral Medicine · doi:10.1080/21642850.2017.1338958 · Cited by 21 · see citing works
Self-citationHoo, Z. H., Curley, R., Walters, S. J., Campbell, M. J., & Wildman, M. J. (2019) · Journal of Cystic Fibrosis · doi:10.1016/j.jcf.2019.10.008 · Cited by 17 · see citing works
Self-citationDawson, S., Girling, C.-J., Cowap, L., & Clark-Carter, D. (2023) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd013766.pub2 · Cited by 14 · see citing works
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Self-citationAn empirical method to cluster objective nebulizer adherence data among adults with cystic fibrosis
Hoo, Z. H., Campbell, M. J., Curley, R., & Wildman, M. J. (2017) · Patient Preference and Adherence · doi:10.2147/ppa.s131497 · Cited by 11 · see citing works
Self-citationUse of inhaled antibiotics among Danish patients with cystic fibrosis
Møller, R., Nielsen, B. U., Faurholt‐Jepsen, D., Katzenstein, T. L., Skov, M., Philipsen, L. K. D., Pressler, T., Johansen, H. K., & Qvist, T. (2022) · Pediatric Pulmonology · doi:10.1002/ppul.25942 · Cited by 9 · see citing works
Hoo, Z. H., Wildman, M. J., Curley, R., Walters, S. J., & Campbell, M. J. (2017) · Respirology · doi:10.1111/resp.13174 · Cited by 8 · see citing works
Self-citationHoo, Z. H., Coates, E. J., Maguire, C., Cantrill, H., Shafi, N., Nash, E. F., McGowan, A., Bourke, S., Flight, W. G., Daniels, T. W. V., et al. (2018) · European Journal of Clinical Microbiology & Infectious Diseases · doi:10.1007/s10096-018-3358-8 · Cited by 6 · see citing works
Self-citationGirling, C., Packham, A., Robinson, L., Arden, M. A., Hind, D., & Wildman, M. J. (2022) · Implementation Science Communications · doi:10.1186/s43058-022-00263-9 · Cited by 6 · see citing works
Self-citationAdherence to inhaled therapies over 4 years in people with cystic fibrosis
Manika, Κ., Hatziagorou, E., Kotoulas, S., Kyrvasili, S., Sourla, E., Kouroukli, E., Sionidou, M., Papadaki, E., & Tsanakas, J. N. (2022) · Pediatric Pulmonology · doi:10.1002/ppul.25834 · Cited by 4 · see citing works
Cystic fibrosis and caseload midwifery
Borges, S. (2021) · British Journal of Midwifery · doi:10.12968/bjom.2021.29.12.712 · Cited by 1 · see citing works
614 Time between clinic visits of individuals with cystic fibrosis: patterns across the lifespan
Hinton, A., Sears, E. H., López‐Pintado, S., & Zuckerman, J. B. (2023) · Journal of Cystic Fibrosis · doi:10.1016/s1569-1993(23)01536-9 · Cited by 1 · see citing works
612 Treatment options for those not taking CFTR modulators: secondary analysis of the ACtiF dataset
Lai, L. Y. H., Daniels, T., Wildman, M. J., & Hoo, Z. H. (2023) · Journal of Cystic Fibrosis · doi:10.1016/s1569-1993(23)01534-5 · Cited by 1 · see citing works
Self-citationTakhtamysheva, A. V. (2024) · Tuberculosis and lung diseases · doi:10.58838/2075-1230-2024-102-1-82-86 · Cited by 1 · see citing works
Dawson, S., Cowap, L., Clark-Carter, D. D., & Girling, C. (2020) · Cochrane Database of Systematic Reviews · doi:10.1002/14651858.cd013766 · Cited by 1 · see citing works
Arden, M. A., Hutchings, M., Whelan, P., Drabble, S. J., Beever, D., Bradley, J. M., Hind, D., Ainsworth, J. D., Maguire, C., Cantrill, H., et al. (2020) · doi:10.31234/osf.io/gbcpk
Self-citationDaniels, T., Lai, L. Y. H., Wildman, M. J., & Hoo, Z. H. (2023) · Journal of Cystic Fibrosis · doi:10.1016/s1569-1993(23)01535-7
Self-citationThee, S., Stahl, M., Fischer, R., Sutharsan, S., Ballmann, M., Müller, A., Lorenz, D., Urbanski-Rini, D., Püschner, F., Amelung, V. E., et al. (2021) · Figshare · doi:10.6084/m9.figshare.14462512
- Authors
- Hoo, Z. H., Curley, R., Campbell, M. J., Walters, S. J., Hind, D., & Wildman, M. J.
- Affiliations
- Northern General Hospital (GB)
- University of Sheffield (GB)
- Corresponding author
- Wildman, Martin J
- Venue
- Patient Preference and Adherence
- Publisher
- Informa UK Limited
- Published
- 2016-05
- Volume
- 10
- Pages
- 887
- ISSN
- 1177-889X (ISSN-L)
- PMC
- PMC4883819
- OpenAlex
- W2402934670
- Cited by
- 27
- References
- 95
- Citations by year
- 2024: 1 · 2023: 4 · 2022: 3 · 2021: 6 · 2020: 2 · 2019: 2 · 2018: 4 · 2017: 4
- FWCI
- 4.06
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Patient Preference and Adherence (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- White Rose Research Online (University of Leeds, The University of Sheffield, University of York) (acceptedVersion)
- Dove Medical Press (Taylor and Francis Group) (submittedVersion, cc-by)
- Funders
- National Institute for Health and Care Research (DRF-2014-07-092, RP-PG-1212-20015)
- Medical Research Council
- Programme Grants for Applied Research (RP-PG-1212-20015)
- Topics
- Health Sciences › Medicine › Family Practice › Medication Adherence and Compliance
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Cystic Fibrosis Research Advances
- Health Sciences › Medicine › Pulmonary and Respiratory Medicine › Inhalation and Respiratory Drug Delivery
- Keywords
- cystic fibrosis, Pseudomonas aeruginosa, pulmonary exacerbations, medication overuse, adults with cystic fibrosis
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.
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