Patients' Perspective on Supposedly Patient-relevant Process and Outcome Parameters: a Cross-sectional Survey Within the 'PRO Patients Study'

Overview

Journal BMC Health Serv Res

Publisher Biomed Central

Specialty Health Services

Date 2022 Jan 15

PMID 35031052

Authors

Christine Kersting

Julia Hulsmann

Klaus Weckbecker

Achim Mortsiefer

Affiliations

Soon will be listed here.

Abstract

Background: To be able to make informed choices based on their individual preferences, patients need to be adequately informed about treatment options and their potential outcomes. This implies that studies measure the effects of care based on parameters that are relevant to patients. In a previous scoping review, we found a wide variety of supposedly patient-relevant parameters that equally addressed processes and outcomes of care. We were unable to identify a consistent understanding of patient relevance and therefore aimed to develop an empirically based concept including a generic set of patient-relevant parameters. As a first step we evaluated the process and outcome parameters identified in the scoping review from the patients' perspective.

Methods: We conducted a cross-sectional survey among German general practice patients. Ten research practices of Witten/Herdecke University supported the study. During a two-week period in the fall of 2020, patients willing to participate self-administered a short questionnaire. It evaluated the relevance of the 32 parameters identified in the scoping review on a 5-point Likert scale and offered a free-text field for additional parameters. These free-text answers were inductively categorized by two researchers. Quantitative data were analyzed using descriptive statistics. Bivariate analyses were performed to determine whether there are any correlations between rating a parameter as highly relevant and patients' characteristics.

Results: Data from 299 patients were eligible for analysis. All outcomes except 'sexuality' and 'frequency of healthcare service utilization' were rated important. 'Confidence in therapy' was rated most important, followed by 'prevention of comorbidity' and 'mobility'. Relevance ratings of five parameters were associated with patients' age and gender, but not with their chronic status. The free-text analysis revealed 15 additional parameters, 12 of which addressed processes of care, i.e., 'enough time in physician consultation'.

Conclusion: Patients attach great value to parameters addressing processes of care. It appears as though the way in which patients experience the care process is not less relevant than what comes of it. Relevance ratings were not associated with chronic status, but few parameters were gender- and age-related.

Trial Registration: Core Outcome Measures in Effectiveness Trials Initiative, registration number: 1685.

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References

Ciani O, Salcher-Konrad M, Meregaglia M, Smith K, Gorst S, Dodd S . Patient-reported outcome measures in core outcome sets targeted overlapping domains but through different instruments. J Clin Epidemiol. 2021; 136:26-36. DOI: 10.1016/j.jclinepi.2021.03.003. View

Fayed N, Kraus de Camargo O, Elahi I, Dubey A, Fernandes R, Houtrow A . Patient-important activity and participation outcomes in clinical trials involving children with chronic conditions. Qual Life Res. 2013; 23(3):751-7. DOI: 10.1007/s11136-013-0483-9. View

Ameur H, Ravaud P, Fayard F, Riveros C, Dechartres A . Systematic reviews of therapeutic interventions frequently consider patient-important outcomes. J Clin Epidemiol. 2017; 84:70-77. DOI: 10.1016/j.jclinepi.2017.01.006. View

von Elm E, Altman D, Egger M, Pocock S, Gotzsche P, Vandenbroucke J . Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. BMJ. 2007; 335(7624):806-8. PMC: 2034723. DOI: 10.1136/bmj.39335.541782.AD. View

Murad M, Shah N, Van Houten H, Ziegenfuss J, Deming J, Beebe T . Individuals with diabetes preferred that future trials use patient-important outcomes and provide pragmatic inferences. J Clin Epidemiol. 2010; 64(7):743-8. DOI: 10.1016/j.jclinepi.2010.08.005. View

Fei Y, Guyatt G, Alexander P, El Dib R, Siemieniuk R, Vandvik P . Addition of Ezetimibe to statins for patients at high cardiovascular risk: Systematic review of patient-important outcomes. J Eval Clin Pract. 2017; 24(1):222-231. DOI: 10.1111/jep.12663. View

Griffith L, Gilsing A, Mangin D, Patterson C, van den Heuvel E, Sohel N . Multimorbidity Frameworks Impact Prevalence and Relationships with Patient-Important Outcomes. J Am Geriatr Soc. 2019; 67(8):1632-1640. DOI: 10.1111/jgs.15921. View

Entwistle V, Watt I . Patient involvement in treatment decision-making: the case for a broader conceptual framework. Patient Educ Couns. 2006; 63(3):268-78. DOI: 10.1016/j.pec.2006.05.002. View

Kersting C, Kneer M, Barzel A . Patient-relevant outcomes: what are we talking about? A scoping review to improve conceptual clarity. BMC Health Serv Res. 2020; 20(1):596. PMC: 7325243. DOI: 10.1186/s12913-020-05442-9. View

10.

Van der Elst K, Meyfroidt S, De Cock D, De Groef A, Binnard E, Moons P . Unraveling Patient-Preferred Health and Treatment Outcomes in Early Rheumatoid Arthritis: A Longitudinal Qualitative Study. Arthritis Care Res (Hoboken). 2015; 68(9):1278-87. DOI: 10.1002/acr.22824. View

11.

Sung V, Rogers R, Barber M, Clark M . Conceptual framework for patient-important treatment outcomes for pelvic organ prolapse. Neurourol Urodyn. 2013; 33(4):414-9. PMC: 3796042. DOI: 10.1002/nau.22397. View

12.

Dinglas V, Faraone L, Needham D . Understanding patient-important outcomes after critical illness: a synthesis of recent qualitative, empirical, and consensus-related studies. Curr Opin Crit Care. 2018; 24(5):401-409. PMC: 6133198. DOI: 10.1097/MCC.0000000000000533. View

13.

Wilson H, Middleton R, Abram S, Smith S, Alvand A, Jackson W . Patient relevant outcomes of unicompartmental versus total knee replacement: systematic review and meta-analysis. BMJ. 2019; 364:l352. PMC: 6383371. DOI: 10.1136/bmj.l352. View

14.

Sanderson T, Morris M, Calnan M, Richards P, Hewlett S . What outcomes from pharmacologic treatments are important to people with rheumatoid arthritis? Creating the basis of a patient core set. Arthritis Care Res (Hoboken). 2010; 62(5):640-6. PMC: 2887082. DOI: 10.1002/acr.20034. View

15.

Wieseler B, Wolfram N, McGauran N, Kerekes M, Vervolgyi V, Kohlepp P . Completeness of reporting of patient-relevant clinical trial outcomes: comparison of unpublished clinical study reports with publicly available data. PLoS Med. 2013; 10(10):e1001526. PMC: 3793003. DOI: 10.1371/journal.pmed.1001526. View

16.

Kersting C, Barzel A, Mortsiefer A . Mixed-methods approach to develop an agreed concept on patient relevance: study protocol for the 'PRO patients study'. BMJ Open. 2021; 11(7):e047679. PMC: 8273474. DOI: 10.1136/bmjopen-2020-047679. View

17.

Giacalone M, Agata Z, Cozzucoli P, Alibrandi A . Bonferroni-Holm and permutation tests to compare health data: methodological and applicative issues. BMC Med Res Methodol. 2018; 18(1):81. PMC: 6054729. DOI: 10.1186/s12874-018-0540-8. View

18.

El Dib R, Tikkinen K, Akl E, Gomaa H, Mustafa R, Agarwal A . Systematic survey of randomized trials evaluating the impact of alternative diagnostic strategies on patient-important outcomes. J Clin Epidemiol. 2017; 84:61-69. DOI: 10.1016/j.jclinepi.2016.12.009. View

19.

Blome C, Augustin M, Heyer K, Knofel J, Cornelsen H, Purwins S . Evaluation of patient-relevant outcomes of lymphedema and lipedema treatment: development and validation of a new benefit tool. Eur J Vasc Endovasc Surg. 2013; 47(1):100-7. DOI: 10.1016/j.ejvs.2013.10.009. View

20.

Gandhi G, Murad M, Fujiyoshi A, Mullan R, Flynn D, Elamin M . Patient-important outcomes in registered diabetes trials. JAMA. 2008; 299(21):2543-9. DOI: 10.1001/jama.299.21.2543. View