Incorporating patient perspectives in health technology assessments and clinical practice guidelines

Hämeen‐Anttila, Katri; Komulainen, Jorma; Enlund, Hannes; Mākelä, Marjukka; Mäkinen, Erkki; Rannanheimo, Piia; Sipilä, Raija

doi:10.1016/j.sapharm.2015.12.005

Cited by 19 publications

(29 citation statements)

References 13 publications

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“…Data extracted from included studies are available in File S2. [38][39][40][41][42][43][44][45][46][47][48][49][50][51][52][53] vealed that the best approach was unknown. 47 Of the remaining 14 studies, 6 (42.9%) identified patient preferences for the purpose of guideline development, [40][41][42]49,50,53 and 10 (71.4%) explored various methods for doing so.…”

Section: Search Resultsmentioning

confidence: 99%

“…47 Of the remaining 14 studies, 6 (42.9%) identified patient preferences for the purpose of guideline development, [40][41][42]49,50,53 and 10 (71.4%) explored various methods for doing so. 38,39,[43][44][45][46][47][48]51,52…”

Section: Search Resultsmentioning

confidence: 99%

“…Determinants are summarized in Table 2. Two studies identified facilitators of involving patients in identifying preferences: both suggested that training in research methods and clinical practice guidelines was needed, 40,46 and 1 also recommended a combination of in-person and virtual meetings. 40 Seven studies identified barriers to identifying patient preferences.…”

Section: Determinants and Impact Of Identifying Incorporating Or Rmentioning

confidence: 99%

“…51 Nearly all other barriers pertained to involving patients as guideline development panellists. Barriers included finding appropriate patients that represented the larger population and not just their own views, 43,46 institutional review boards that questioned the involvement of patients as panellists, 40 scheduling meetings at a time convenient for patients, 52 lack of understanding among patients about what constitutes a preference, 47 lack of understanding of medical jargon 52 and patients becoming easily overruled by professional panellists resulting in token involvement. 49 One study identified a barrier pertaining to incorporating preferences: lack of clarity on how to weight preferences.…”

Section: Determinants and Impact Of Identifying Incorporating Or Rmentioning

confidence: 99%

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How to identify, incorporate and report patient preferences in clinical guidelines: A scoping review

Kim

Armstrong

Berta

et al. 2020

Health Expectations

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Background Clinical guidelines optimize care delivery and outcomes. Guidelines support patient engagement and adherence if they reflect patient preferences for treatment options, risks and benefits. Many guidelines do not address patient preferences. Developers require insight on how to develop such guidelines. Objective To conduct a scoping review on how to identify, incorporate and report patient preferences in guidelines. Search We searched MEDLINE, EMBASE, Scopus, CINAHL, OpenGrey and GreyLit from 2010 to November 2019. Eligibility We included English language studies describing patient preferences and guidelines. Data extraction and synthesis We reported approaches for and determinants and impacts of identifying patient preferences using summary statistics and text, and interpreted findings using a conceptual framework of patient engagement in guideline development. Results Sixteen studies were included: 2 consulted patients and providers about patient engagement approaches, and 14 identified patient preferences (42.9%) or methods for doing so (71.4%). Studies employed single (57.1%) or multiple (42.9%) methods for identifying preferences. Eight (57.1%) incorporated preferences in one aspect of guideline development, while 6 (42.9%) incorporated preferences in multiple ways, most commonly to identify questions, benefits or harms, and generate recommendations. Studies did not address patient engagement in many guideline development steps. Included studies were too few to establish the best approaches for identifying or incorporating preferences. Fewer than half of the studies (7, 43.8%) explored barriers. None examined reporting preferences in guidelines. Conclusions Research is needed to establish the single or multiple approaches that result in incorporating and reporting preferences in all guideline development steps.

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Section: Search Resultsmentioning

confidence: 99%

Section: Search Resultsmentioning

confidence: 99%

Section: Determinants and Impact Of Identifying Incorporating Or Rmentioning

confidence: 99%

Section: Determinants and Impact Of Identifying Incorporating Or Rmentioning

confidence: 99%

See 2 more Smart Citations

How to identify, incorporate and report patient preferences in clinical guidelines: A scoping review

Kim

Armstrong

Berta

et al. 2020

Health Expectations

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“…Strong methodological expertise and the inclusion of all relevant clinical professionals as well as patient and public groups have been advocated as paramount for developing and implementing guidelines. Patient and public representatives offer valuable social, ethical and organizational insights that might otherwise be overlooked. An example is ‘patient preferences’, where the desirability of a particular treatment choice may determine the optimal treatment for the individual.…”

Section: Discussionmentioning

confidence: 99%

Systematic review of clinical practice guidelines in kidney transplantation

et al. 2017

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BackgroundClinical practice guidelines (CPGs) are widely used to inform the development of protocols for clinical management. Previous work has demonstrated that the quality of CPGs varies widely. This systematic review aimed to determine the quality of CPGs in kidney transplantation in the UK.MethodsCPGs in kidney transplantation published between 2010 and 2017 were identified through searches of MEDLINE, NHS NICE Evidence, and websites of relevant UK societies. Using the Appraisal of Guidelines for Research and Evaluation (AGREE) II tool, three appraisers rated the quality of CPGs across six domains, the overall quality of each CPG, and whether it should be recommended for future use. Domain scores were calculated, and inter‐rater reliability using the intraclass correlation coefficient (ICC) was reported.ResultsThirteen CPGs met the inclusion criteria. The domain ‘clarity of presentation’ scored highest, followed closely by ‘scope and purpose’. The poorest scoring domains were ‘applicability’ and ‘editorial independence’. Editorial independence also had the widest range of scores. Of the 13 CPGs, one was not recommended for future use, seven were recommended for use with modifications, and five for future use with no need for modification. Mean overall CPG quality was 5 (range 3–6) of a maximum score of 7, and mean inter‐rater reliability was substantial with an ICC of 0·71.ConclusionUK CPGs scored satisfactorily, although with wide variation in how well each domain scored both within and across CPGs. The quality of UK CPGs can still be improved.

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Evaluation of Clinical Practice Guidelines on Fall Prevention and Management for Older Adults

et al. 2021

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IMPORTANCEWith the global population aging, falls and fall-related injuries are ubiquitous, and several clinical practice guidelines for falls prevention and management for individuals 60 years or older have been developed. A systematic evaluation of the recommendations and agreement level is lacking.OBJECTIVES To perform a systematic review of clinical practice guidelines for falls prevention and management for adults 60 years or older in all settings (eg, community, acute care, and nursing homes), evaluate agreement in recommendations, and identify potential gaps. EVIDENCE REVIEW A systematic review following Preferred Reporting Items for SystematicReviews and Meta-analyses statement methods for clinical practice guidelines on fall prevention and management for older adults was conducted (updated July 1, 2021) using MEDLINE, PubMed, PsycINFO, Embase, CINAHL, the Cochrane Library, PEDro, and Epistemonikos databases. Medical Subject Headings search terms were related to falls, clinical practice guidelines, management and prevention, and older adults, with no restrictions on date, language, or setting for inclusion. Three independent reviewers selected records for full-text examination if they followed evidence-and consensus-based processes and assessed the quality of the guidelines using Appraisal of Guidelines for Research & Evaluation II (AGREE-II) criteria. The strength of the recommendations was evaluated using Grades of Recommendation, Assessment, Development, and Evaluation scores, and agreement across topic areas was assessed using the Fleiss κ statistic. FINDINGSOf 11 414 records identified, 159 were fully reviewed and assessed for eligibility, and 15 were included. All 15 selected guidelines had high-quality AGREE-II total scores (mean [SD], 80.1% [5.6%]), although individual quality domain scores for clinical applicability (mean [SD], 63.4% [11.4%]) and stakeholder (clinicians, patients, or caregivers) involvement (mean [SD], 76.3% [9.0%]) were lower. A total of 198 recommendations covering 16 topic areas in 15 guidelines were identified after screening 4767 abstracts that proceeded to 159 full texts. Most (Ն11) guidelines strongly recommended performing risk stratification, assessment tests for gait and balance, fracture and osteoporosis management, multifactorial interventions, medication review, exercise promotion, environment modification, vision and footwear correction, referral to physiotherapy, and cardiovascular interventions. The strengths of the recommendations were inconsistent for vitamin D supplementation, addressing cognitive factors, and falls prevention education. Recommendations on use of hip protectors and digital technology or wearables were often missing. None of the examined guidelines included a patient or caregiver panel in their deliberations.

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Incorporating patient perspectives in health technology assessments and clinical practice guidelines

Cited by 19 publications

References 13 publications

How to identify, incorporate and report patient preferences in clinical guidelines: A scoping review

How to identify, incorporate and report patient preferences in clinical guidelines: A scoping review

Systematic review of clinical practice guidelines in kidney transplantation

Evaluation of Clinical Practice Guidelines on Fall Prevention and Management for Older Adults

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