Importance of hemodialysis-related outcomes: comparison of ratings by a self-help group, clinicians, and health technology assessment  authors with those by a large reference group of patients

Janssen, I.; Scheibler, Fueloep; Gerhardus, Ansgar

doi:10.2147/ppa.s122319

Cited by 12 publications

(8 citation statements)

References 23 publications

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“…Thus, patients give greater importance to PROMs than clinicians and managers, and this happens with all three estimation methods used (face-to-face: WS and AHP, and via Internet). The results corroborate a finding that has already been revealed in previous research using other methodologies [21,22]. Mortality also has a differentiated weighting: lower for patients and higher for clinicians and managers.…”

Section: Discussionsupporting

confidence: 88%

Evaluation of dialysis centres: values and criteria of the stakeholders

Parra

Arenas

Luis

et al. 2020

BMC Health Serv Res

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Background: Evaluation of renal replacement therapy with haemodialysis is essential for its improvement. Remarkably, outcomes vary across centres. In addition, the methods used have important epistemological limitations, such as ignoring significant features (e.g., quality of life) or no relevance given to the patient's perspective in the indicator's selection. The present study aimed to determine the opinions and preferences of stakeholders (patients, clinicians, and managers) and establish their relative importance, considering the complexity of their interactions, to facilitate a comprehensive evaluation of haemodialysis centres. Methods: Successive working groups (WGs) were established using a multicriteria methodology. WG1 created a draft of criteria and sub-criteria, WG2 agreed, using a qualitative structured analysis with pre-established criteria, and WG3 was composed of three face-to-face subgroups (WG3-A, WG3-B, and WG3-C) that weighted them using two methodologies: weighted sum (WS) and analytic hierarchy process (AHP). Subsequently, they determined a preference for the WS or AHP results. Finally, via the Internet, WG4 weighted the criteria and sub-criteria by the method preferred by WG3, and WG5 analysed the results. Results: WG1 and WG2 identified and agreed on the following evaluation criteria: evidence-based variables (EBVs), annual morbidity, annual mortality, patient-reported outcome measures (PROMs), and patient-reported experience measures (PREMs). The EBVs consisted of five sub-criteria: type of vascular access, dialysis dose, haemoglobin concentration, ratio of catheter bacteraemia, and bone mineral disease. The patients rated the PROMs with greater weight than the other stakeholders in both face-to-face WG3 (WS and AHP) and WG4 via the Internet. The type of vascular access was the most valued sub-criterion. A performance matrix of each criterion and sub-criterion is presented as a reference for assessing the results based on the preferences of the stakeholders. Conclusions: The use of a multicriteria methodology allows the relative importance of the indicators to be determined, reflecting the values of the different stakeholders. In a performance matrix, the inclusion of values and intangible aspects in the evaluation could help in making clinical and organizational decisions.

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Section: Discussionsupporting

confidence: 88%

Evaluation of dialysis centres: values and criteria of the stakeholders

Parra

Arenas

Luis

et al. 2020

BMC Health Serv Res

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“…Reasons related to the unique position of patients • Patients are the ultimate beneficiaries/end-consumers of healthcare [25, 31] • Patients are directly affected by the decision [38, 43, 53, 54, 60, 62] • Patients’ lives are affected by whether their concerns were considered [64] • Patient benefit is an objective of providing healthcare services [64] 3. Reasons related to the positive effect on quality of the decision-making process • It enables judging the consistency of decisions with patient values [64] • It enables a more patient-centered decision-making [19, 36, 40, 52, 53, 58] • It allows evidence-based consideration of patient perspectives [24, 36, 38, 40, 43, 45, 52, 58, 64, 65] • It ensures patient needs are better met [25, 53, 64] • Measurements of clinical effects usually do not sufficiently capture PP [38, 64] • It facilitates integration of patient concerns into decision-making [66] • It increases the effectiveness of patient involvement strategies [62] • It solves the issue of which patients to involve directly in decision-making [38] • It may be more representative than direct patient involvement [24, 25, 38, 40, 43, 58, 60, 62, 67, 68] • It is required for the implementation of evidence-based medicine [64]Reasons for using PP grouped into reasons related to the unique insights and position of patients and reasons related to the positive effect of including PP on decision-making (bold and underlined font). PP patient preferences, MPLC medical product life cycle…”

Section: Resultsmentioning

confidence: 99%

Opportunities and challenges for the inclusion of patient preferences in the medical product life cycle: a systematic review

Janssens

Huys

Overbeeke

et al. 2019

BMC Med Inform Decis Mak

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BackgroundThe inclusion of patient preferences (PP) in the medical product life cycle is a topic of growing interest to stakeholders such as academics, Health Technology Assessment (HTA) bodies, reimbursement agencies, industry, patients, physicians and regulators. This review aimed to understand the potential roles, reasons for using PP and the expectations, concerns and requirements associated with PP in industry processes, regulatory benefit-risk assessment (BRA) and marketing authorization (MA), and HTA and reimbursement decision-making.MethodsA systematic review of peer-reviewed and grey literature published between January 2011 and March 2018 was performed. Consulted databases were EconLit, Embase, Guidelines International Network, PsycINFO and PubMed. A two-step strategy was used to select literature. Literature was analyzed using NVivo (QSR international).ResultsFrom 1015 initially identified documents, 72 were included. Most were written from an academic perspective (61%) and focused on PP in BRA/MA and/or HTA/reimbursement (73%). Using PP to improve understanding of patients’ valuations of treatment outcomes, patients’ benefit-risk trade-offs and preference heterogeneity were roles identified in all three decision-making contexts. Reasons for using PP relate to the unique insights and position of patients and the positive effect of including PP on the quality of the decision-making process. Concerns shared across decision-making contexts included methodological questions concerning the validity, reliability and cognitive burden of preference methods. In order to use PP, general, operational and quality requirements were identified, including recognition of the importance of PP and ensuring patient understanding in PP studies.ConclusionsDespite the array of opportunities and added value of using PP throughout the different steps of the MPLC identified in this review, their inclusion in decision-making is hampered by methodological challenges and lack of specific guidance on how to tackle these challenges when undertaking PP studies. To support the development of such guidance, more best practice PP studies and PP studies investigating the methodological issues identified in this review are critically needed.Electronic supplementary materialThe online version of this article (10.1186/s12911-019-0875-z) contains supplementary material, which is available to authorized users.

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“…The present study also reveals tension around the question of whether to involve individual patients, disease-specific patient organizations or umbrella patient organizations in decision-making. Whereas, direct involvement would give decision-makers a quick and in-depth idea of individual patient experiences, its ability of representing the entire patient population was criticized by interviewees in the current study and has also been criticized by other authors ( 12 , 17 , 30 – 37 ). Patient organization representatives could be useful in this regard since they are representing a group of patients rather than one patient, but as mentioned by interviewees in the current study, they could be criticized for being dependent of pharmaceutical companies.…”

Section: Discussionmentioning

confidence: 83%

Patient Involvement in the Lifecycle of Medicines According to Belgian Stakeholders: The Gap Between Theory and Practice

et al. 2018

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Background: Patient involvement is often acknowledged as an important aspect of the lifecycle of medicines. Although different typologies exist, patient involvement has been described as the involvement of patients in decision-making regarding medicines. In view of the diversity of stakeholders and types of decisions in which patients might be involved, an in-depth understanding of these stakeholders' views toward involving patients in the lifecycle of medicines is essential.Methods: Interviews and surveys were used to gain insights into the perspectives and experiences of Belgian healthcare stakeholders. Interviews (n = 22) were conducted with academics, hospital pharmacists and representatives from health insurance funds, the Belgian reimbursement agency, pharmaceutical industry and patient organizations. Interviews underwent a framework analysis. Surveys (n = 108) were completed by hospital visitors and analyzed descriptively.Results: Despite an increasing amount of efforts to involve patients, interviewees labeled the level of actively involving patients as rather low and scattered across the different phases of the lifecycle of medicines. The main opportunities for patient involvement highlighted by interviewees were for: (i) informing early development decisions on which treatments to develop, (ii) clinical trial endpoint selection and (iii) clinical trial protocol design. However, remaining questions surrounding patient knowledge, and particularly how and which patients to involve represent important barriers toward implementing patient involvement in the lifecycle of medicines. Of survey participants, 77% indicated to be willing to participate in patient preference studies. Reasons for participating mentioned most frequently were “to improve development of treatments,” because “it is important to explore and listen to patient preferences” and “to have a voice as patients”.Conclusions: The barriers identified in this study hamper transitioning patient involvement from theory to practice. Bridging this gap requires addressing the identified barriers and unresolved questions surrounding the right methodology for involving patients, the “right patients” to involve and means to increase patient knowledge. In order to do so, further research should focus on assessing the value of methods that allow to indirectly capture patients' perspective both in the context of development as well as in the context of evaluation.

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Importance of hemodialysis-related outcomes: comparison of ratings by a self-help group, clinicians, and health technology assessment authors with those by a large reference group of patients

Cited by 12 publications

References 23 publications

Evaluation of dialysis centres: values and criteria of the stakeholders

Evaluation of dialysis centres: values and criteria of the stakeholders

Opportunities and challenges for the inclusion of patient preferences in the medical product life cycle: a systematic review

Patient Involvement in the Lifecycle of Medicines According to Belgian Stakeholders: The Gap Between Theory and Practice

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