Biomedical subjects

Hilary Llewellyn-Thomas

Publications and source records attributed to Hilary Llewellyn-Thomas.

6 recordsLinked to original sources

PubMed2006

Developing a quality criteria framework for patient decision aids: online international Delphi consensus process.

OBJECTIVE: To develop a set of quality criteria for patient decision support technologies (decision aids). DESIGN AND SETTING: Two stage web based Delphi process using online rating process to enable international collaboration. PARTICIPANTS: Individuals from four stakeholder groups (researchers, practitioners, patients, policy makers) representing 14 countries reviewed evidence summaries and rated the importance of 80 criteria in 12 quality domains on a 1 to 9 scale. Second round participants received feedback from the first round and repeated their assessment of the 80 criteria plus three new ones. MAIN OUTCOME MEASURE: Aggregate ratings for each criterion calculated using medians weighted to compensate for different numbers in stakeholder groups; criteria rated between 7 and 9 were retained. RESULTS: 212 nominated people were invited to participate. Of those invited, 122 participated in the first round (77 researchers, 21 patients, 10 practitioners, 14 policy makers); 104/122 (85%) participated in the second round. 74 of 83 criteria were retained in the following domains: systematic development process (9/9 criteria); providing information about options (13/13); presenting probabilities (11/13); clarifying and expressing values (3/3); using patient stories (2/5); guiding/coaching (3/5); disclosing conflicts of interest (5/5); providing internet access (6/6); balanced presentation of options (3/3); using plain language (4/6); basing information on up to date evidence (7/7); and establishing effectiveness (8/8). CONCLUSIONS: Criteria were given the highest ratings where evidence existed, and these were retained. Gaps in research were highlighted. Developers, users, and purchasers of patient decision aids now have a checklist for appraising quality. An instrument for measuring quality of decision aids is being developed.

Decision Support Techniques↗

PubMed2006

The influence of socio-demographic factors, treatment perceptions and attitudes to living donation on willingness to consider living kidney donor among kidney transplant candidates.

BACKGROUND: Living donor, compared with cadaveric donor kidney transplantation, is associated with prolonged graft survival and increased life expectancy for patients with end-stage renal disease (ESRD). However, access to living donor transplantation remains variable. Our objective was to further our understanding of the factors associated with the willingness to consider living donor kidney transplant (LDKTx). METHODS: All patients from two tertiary care hospitals being assessed for a LDKTx (n = 81), and a random sample of patients on the waiting list for a cadaveric kidney transplant (CDKTx, n = 133) were invited to participate. A mail survey assessed participants' socio-demographic characteristics, and perceptions of dialysis, CDKTx and LDKTx. Multivariable logistic regression was used to assess the influence of these factors on willingness to consider LDKTx. RESULTS: Adjusting for patient age, employment status and number of close relatives, willingness to consider an LDKTx was independently associated with a lower perceived risk of peri-operative complications to the donor (adjusted OR 3.59, P = 0.02), the perception that the recipient would live longer following living donor transplantation (adjusted OR 4.34, P = 0.003) and greater perceived appropriateness of asking a family member to donate a kidney (adjusted OR 5.06, P = 0.007). CONCLUSION: Among the ESRD patients studied, adjusting for key factors that may be associated with access to LDKTx, perceptions about risks to the donor and benefits to the recipient were independently associated with a willingness to consider LDKTx as a treatment option. Provision of standardized comprehensible information about all treatment options to patients with ESRD may improve acceptance rates for living donor transplantation.

Adult↗

PubMed2006

Understanding treatment decision making: contexts, commonalities, complexities, and challenges.

BACKGROUND: The diagnosis of cancer sets off a cascade of complex decisions at a time when patients feel vulnerable and distressed. Although clinical decisions used to follow one standard, many guidelines now outline several options and include explicit recognition of the need to incorporate patients' preferences to determine the most appropriate treatment. PURPOSE: The purpose of this article is to provide a brief overview of empirical studies about cancer patients' treatment-related decision making, to highlight the areas of congruence and divergence in that empirical literature, and then to generate a framework that points to future interventions and research. METHODS: Through a group discussion with a range of experts in the field, we generated a framework for the critical treatment decisions and key issues within those decisions. Then, we reviewed the literature describing the experiences of cancer patients and evaluating interventions designed to improve the quality of treatment decisions. RESULTS: We identified four major differences that influence decision making across cancers and across individuals with the same diagnosis. We also identified four common themes across situations and people. There is considerable evidence that decision aids can improve the quality of decisions across a range of diseases, although the data for cancer treatment decision making are limited. Other interventions such as navigation-skill training are promising but have little evidence of benefit for cancer decisions. CONCLUSIONS: There are many opportunities for behavioral research to extend and contribute to the understanding and improvement of cancer treatment decision making. Some key areas in need of research include developing taxonomies of disease and patient characteristics and increasing understanding of the lived experiences of cancer survivors, of the influence of time and timing, of the relationship of information and preferences, and of participation in randomized clinical trials.

Comprehension↗

PubMed2004

Psychological responses to prenatal NTS counseling and the uptake of invasive testing in women of advanced maternal age.

This study examines women's psychological responses to prenatal group genetic counseling, and to subsequent individualized risk counseling. All women (N=123) aged 35 and older underwent nuchal translucency screening (NTS), a prenatal ultrasound screening test. After group counseling, decisional conflict decreased significantly among those reporting at baseline having made a decision about invasive testing (t(222)=2.0, P=0.014) and for those who were uncertain (t(222)=5.74, P <0.0005). After receiving NT-adjusted risks, decisional conflict decreased further for those uncertain about testing at baseline (t(222)=4.64, P <0.0005). There was no change in risk perception and anxiety after group counseling. After NT-adjusted risks were communicated, risk perception decreased significantly (t(230)=5.02, P <0.0005), as did anxiety (t(115)=7.91, P <0.005). Despite reassuring NTS results, the uptake rate for prenatal invasive testing was 78.4%. Risk perception, anxiety, and decisional conflict decreased after individual counseling for reassuring NTS results, but the uptake of invasive testing remained high.

Adult↗

PubMed2003

Mothers' decisions about gastrostomy tube insertion in children: factors contributing to uncertainty.

The purpose of this study was to explore O'Connor's four factors contributing to mothers' uncertainty concerning gastrostomy tube (G-tube) insertion in their children (lack of information; unclear value trade-offs; lack of support; social pressure) in a substitute decision-making context. Fifty mothers participated in one semi-structured interview at the time of their children's G-tube insertion. Children's ages ranged from 2 weeks to 17 years, slightly more than half were male, and most had a primary diagnosis related to a neurological (n = 27) or cardiac (n = 10) condition. Two-thirds of the mothers identified topics about which they wanted more information, the majority reported both gains and losses associated with their decision, three-quarters reported that they had received support during decision making, and half reported that they had felt pressure from family and health care professionals. Results indicate that mothers' decisions about G-tube insertion are complex and difficult. The existence and importance of O'Connor's factors in this context are confirmed by mothers' accounts. Because these factors are believed to be modifiable, health care professionals have the opportunity to potentially minimize the extent to which the factors contribute to decision uncertainly. It is recommended that health care professionals implement interventions focused on minimizing uncertainty.

Adolescent↗

PubMed2002

The effects of prenatal group genetic counselling on knowledge, anxiety and decisional conflict: issues for nuchal translucency screening.

This study evaluates the effects of prenatal genetic group counselling on women's anxiety, decisional conflict and levels of knowledge. Participants (N=271) were aged 35 years and older. ANOVA results indicated that pre/postcounselling scores for anxiety did not change significantly, while decisional conflict decreased significantly (P<0.001). Pre/postcounselling scores on two different knowledge measures were analysed using 2x3 mixed ANOVAs for time by highest level of education and by having discussed prenatal diagnosis with one's health care provider. No potential interactions were statistically significant; time alone had a strong significant effect for both knowledge measures (P<0.01); P<0.01, respectively), suggesting that the effects of the counselling intervention were robust. Group genetic counselling is an effective method for education and decision support in the prenatal context, and may serve as a model for other clinical populations facing genetic screening decisions.

Adult↗