Comparing preferences for return of genome sequencing results assessed with rating and ranking items

Guo, Suhan; Goodman, Melody S.; Kaphingst, Kimberly A.

doi:10.1002/jgc4.1186

Cited by 5 publications

(7 citation statements)

References 19 publications

(24 reference statements)

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Those who speak a language other than that being used in the study (or in clinic) likely to need aids to facilitate understanding. No other variables were associated with result preference, which is contrary to earlier studies [5,12,13] which identified a range of demographic and psychological predictors of preferences. For example, Guo et al [12] and Kaphingst et al [5] found that young women with breast cancer who had genetically related children were interested in carrier status regardless of actionability, whereas this variable was not associated with any result return preference in the current study.…”

Section: Discussioncontrasting

confidence: 99%

“…Previous studies suggest that patients consider results with personal utility (such as for reproductive purposes) to be 'actionable', while researchers typically consider those with clinical utility to be 'actionable' [7,8] and therefore worthy of return [9][10][11]. Research also suggests that a person's preferences may be impacted by psychological factors, such as knowledge, worry about genetic risks [5], having genetically related children [12] and genetic causal beliefs [13], so that healthcare providers and patients may view the same results differently. These findings have implications for counselling prior to testing to manage patient expectations as well as for deciding which results to produce and return.…”

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Preferences for return of germline genome sequencing results for cancer patients and their genetic relatives in a research setting

et al. 2022

View full text Add to dashboard Cite

Germline genome sequencing (GS) holds great promise for cancer prevention by identifying cancer risk and guiding prevention strategies, however research evidence is mixed regarding patient preferences for receiving GS results. The aim of this study was to discern preferences for return of results by cancer patients who have actually undergone GS. We conducted a mixed methods study with a cohort of cancer probands (n = 335) and their genetic relatives (n = 199) undergoing GS in a research setting. Both groups completed surveys when giving consent. A subset of participants (n = 40) completed semi-structured interviews. A significantly higher percentage of probands thought people would like to be informed about genetic conditions for which there is prevention or treatment that can change cancer risk compared to conditions for which there is no prevention or treatment (93% [311] versus 65% [216]; p < 0.001). Similar results were obtained for relatives (91% [180] versus 61% [121]; p < 0.001). Themes identified in the analysis of interviews were: (1) Recognised benefits of GS, (2) Balancing benefits with risks, (3) Uncertain results are perceived as unhelpful and (4) Competing obligations. While utility was an important discriminator in what was seen as valuable for this cohort, there was a variety of responses. In view of varied participant preferences regarding return of results, it is important to ensure patient understanding of test validity and identify individual choices at the time of consent to GS. The nature and value of the information, and a contextual understanding of researcher obligations should guide result return.

show abstract

Section: Discussioncontrasting

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Preferences for return of germline genome sequencing results for cancer patients and their genetic relatives in a research setting

et al. 2022

View full text Add to dashboard Cite

show abstract

“…However, these parents also expressed high interest in results that conveyed no personal disease risk information, such as pharmacogenetics (98%), carrier status (95%), and ancestry (96%). Positive views towards receiving carrier status have been shown by others [104,155,160].…”

Section: Participants' Preferences For Receiving Uf or Sfmentioning

confidence: 91%

Return of individual research results from genomic research: A systematic review of stakeholder perspectives

et al. 2021

View full text Add to dashboard Cite

Despite the plethora of empirical studies conducted to date, debate continues about whether and to what extent results should be returned to participants of genomic research. We aimed to systematically review the empirical literature exploring stakeholders’ perspectives on return of individual research results (IRR) from genomic research. We examined preferences for receiving or willingness to return IRR, and experiences with either receiving or returning them. The systematic searches were conducted across five major databases in August 2018 and repeated in April 2020, and included studies reporting findings from primary research regardless of method (quantitative, qualitative, mixed). Articles that related to the clinical setting were excluded. Our search identified 221 articles that met our search criteria. This included 118 quantitative, 69 qualitative and 34 mixed methods studies. These articles included a total number of 118,874 stakeholders with research participants (85,270/72%) and members of the general public (40,967/35%) being the largest groups represented. The articles spanned at least 22 different countries with most (144/65%) being from the USA. Most (76%) discussed clinical research projects, rather than biobanks. More than half (58%) gauged views that were hypothetical. We found overwhelming evidence of high interest in return of IRR from potential and actual genomic research participants. There is also a general willingness to provide such results by researchers and health professionals, although they tend to adopt a more cautious stance. While all results are desired to some degree, those that have the potential to change clinical management are generally prioritized by all stakeholders. Professional stakeholders appear more willing to return results that are reliable and clinically relevant than those that are less reliable and lack clinical relevance. The lack of evidence for significant enduring psychological harm and the clear benefits to some research participants suggest that researchers should be returning actionable IRRs to participants.

show abstract

“…However, there is a possibility that some participants would have liked to give the same rank on some pharmacist services. The literature suggests combining ranking and rating measures [ 45 ], which we have not done in our study but could be relevant for further research. Fifth, the pharmacist services involved in this study were the most frequently used services based on the published literature.…”

Section: Discussionmentioning

confidence: 99%

Pharmacists’ and patients’ perceptions about the importance of pharmacist services types to improve medication adherence among patients with diabetes in Indonesia

Presley

Groot

Pavlova

2021

BMC Health Serv Res

View full text Add to dashboard Cite

Background Various pharmacist services are available to improve medication adherence, including consultation, brochure, etc. Challenges arise on which services are best implemented in practice. Knowledge about patients’ and pharmacists’ preferences can help to prioritize services. This study explores the pharmacists’ and patients’ perceptions about the importance of pharmacist services to improve medication adherence among patients with diabetes in Indonesia. Methods This questionnaire-based cross-sectional study involved adult outpatients with diabetes type 2 and pharmacists from community health centers (CHCs) and hospitals in Surabaya, Indonesia. Random sampling was used to identify 57 CHCs in the study. In addition, based on convenient sampling, three hospitals participated. All pharmacists working at the CHCs and hospitals, who were willing to participate, were included in the study. For patients, minimum sample size was calculated using Slovin’s formula. Patients and pharmacists were asked to rank five pharmacist service types (consultation, brochure/leaflet, patient group discussion, medication review, and phone call refill reminder) according to their importance to improve medication adherence. A face validity test of the self-developed questionnaire was conducted before the data collection. Rank ordered probit models were estimated (STATA 15th software). Results A total of 457 patients from CHCs, 579 patients from hospitals, and 99 pharmacists from both medical facilities were included. Consultation (CHC patients 56.0% vs hospital patients 39.7% vs pharmacists 75.2%) and brochure (CHC patients 23.2% vs hospital patients 27.5% vs pharmacists 11.9%) were the most preferred pharmacist services. Patients with experience getting medication information from pharmacists valued consultation higher than brochure and patient group discussions. Older patients ranked a brochure higher than other services. Patients without formal education in CHCs had a lower probability of giving a high rank to a brochure to improve medication adherence. There was significant positive correlation between the ranking of phone call refill reminder and medication review (0.6940) for patients in CHCs. Conclusion For both patients and pharmacists, consultation, brochure, and group discussion were the highest-ranked services. Education, age, experience with pharmacist services, and medical facility features need to be considered when evaluating which pharmacist services to implement in Indonesia.

show abstract

Comparing preferences for return of genome sequencing results assessed with rating and ranking items

Cited by 5 publications

References 19 publications

Preferences for return of germline genome sequencing results for cancer patients and their genetic relatives in a research setting

Preferences for return of germline genome sequencing results for cancer patients and their genetic relatives in a research setting

Return of individual research results from genomic research: A systematic review of stakeholder perspectives

Pharmacists’ and patients’ perceptions about the importance of pharmacist services types to improve medication adherence among patients with diabetes in Indonesia

Contact Info

Product

Resources

About