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Representativeness of personality and involvement preferences in a web-based survey on healthcare decision-making.

ABSTRACT: BACKGROUND:Obtaining a sample that is representative of the group of interest is of utmost importance in questionnaire studies. In a survey using a state authorized web-portal for citizen communication with authorities, we wanted to investigate the view of adult men on patient involvement in health care decision-making regarding Prostate-Specific Antigen test for prostatic cancer. In this paper, we report on sample characteristics and representativeness of our sample in terms of personality and baseline involvement preferences. METHODS:We compared personality profiles (BFI-10) and baseline healthcare decision-making preferences (CPS) in our sample (n?=?6756) to internationally available datasets. Pooled data from a) US, UK, Canada, Australia, and New Zealand (n?=?1512), b) Germany, Netherlands, Switzerland, and Belgium (n?=?1136), and c) Norway, Sweden, Finland, and Denmark (n?=?1313) were used for BFI-10 comparisons. Regarding CPS, we compared our sample with three previous datasets relating to decision-making in cancer (n?=?425, 387, and 199). RESULTS:Although statistically significant differences particularly appeared in large dataset comparisons, sample BFI-10 and CPS profiles mostly were within the range of those previously reported. Similarity was greatest in BFI-10 comparisons with group a) where no statistically significant difference could be established in factors 'agreeableness' and 'neuroticism' (p?=?.095 and .578, respectively). CONCLUSION:Despite some variation, our sample displays personality and baseline preference profiles that are generally similar to those described in previous international studies. For example, this was the case with the BFI-10 'agreeableness' measure (incl. trust and fault-finding items), an important factor in healthcare decision-making.

SUBMITTER: Birkeland S

PROVIDER: S-EPMC7488239 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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Representativeness of personality and involvement preferences in a web-based survey on healthcare decision-making.

Birkeland Søren S Linkhorst Thea T Haakonsson Anders A Barry Michael John MJ Möller Sören S

BMC health services research 20200910 1

<h4>Background</h4>Obtaining a sample that is representative of the group of interest is of utmost importance in questionnaire studies. In a survey using a state authorized web-portal for citizen communication with authorities, we wanted to investigate the view of adult men on patient involvement in health care decision-making regarding Prostate-Specific Antigen test for prostatic cancer. In this paper, we report on sample characteristics and representativeness of our sample in terms of personal ...[more]

PMID: 32912191

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Project description:BackgroundBeing able to generalize research findings to a broader population outside of the study sample is an important goal in surveys on the internet. We conducted a nationwide, cross-sectional, web-based survey with vignettes illustrating different levels of patient involvement to investigate men's preferences regarding participation in health care decision-making. Following randomization into vignette variants, we distributed the survey among men aged 45 to 70 years through the state-authorized digital mailbox provided by the Danish authorities for secure communication with citizens.ObjectiveThis study aimed to investigate the sociodemographic representativeness of our sample of men obtained in a nationwide web-based survey using the digital mailbox.MethodsResponse rate estimates were established, and comparisons were made between responders and nonresponders in terms of age profiles (eg, average age) and municipality-level information on sociodemographic characteristics.ResultsAmong 22,288 men invited during two waves, a total of 6756 (30.31%) participants responded to the survey. In adjusted analyses, responders' characteristics mostly resembled those of nonresponders. Response rates, however, were significantly higher in older men (odds ratio [OR] 2.83 for responses among those aged 65-70 years compared with those aged 45-49 years, 95% CI 2.58-3.11; P<.001) and in rural areas (OR 1.10 compared with urban areas, 95% CI 1.03-1.18; P=.005). Furthermore, response rates appeared lower in areas with a higher tax base (OR 0.89 in the highest tertile, 95% CI 0.81-0.98; P=.02).ConclusionsOverall, the general population of men aged 45 to 70 years was represented very well by the responders to our web-based survey. However, the imbalances identified highlight the importance of supplementing survey findings with studies of the representativeness of other characteristics of the sample like trait and preference features, so that proper statistical corrections can be made in upcoming analyses of survey responses whenever needed.

Project description:BackgroundSurrogate accuracy in predicting patient treatment preferences (i.e., what patients want) has been studied extensively, but it is not known whether surrogates can predict how patients want loved ones to make end-of-life decisions on their behalf.ObjectiveTo evaluate the ability of family members to correctly identify the preferences of seriously-ill patients regarding family involvement in decision making.DesignCross-sectional survey.ParticipantsTwenty-five pancreatic cancer and 27 amyotrophic lateral sclerosis (ALS) patients and their family members (52 dyads total).Main measuresPatients and family members completed the Decision Control Preferences (DCP) scale regarding patient preferences for family involvement in health care decisions using conscious and unconscious scenarios.Key resultsPatient and family member agreement was 56% (29/52 dyads) for the conscious scenario (kappa 0.29) and 46% (24/52 dyads) for the unconscious scenario (kappa 0.15). Twenty-four family members identified the patient's preference as independent in the unconscious scenario, but six of these patients actually preferred shared decision making and six preferred reliant decision making. In the conscious scenario, preference for independent decision making was associated with higher odds of patient-family agreement (AOR 5.28, 1.07-26.06). In the unconscious scenario, cancer patients had a higher odds of agreement than ALS patients (AOR 3.86; 95% CI 1.02-14.54).ConclusionFamily members were often unable to correctly identify patient preferences for family involvement in end-of-life decision making, especially when patients desired that decisions be made using the best-interest standard. Clinicians and family members should consider explicitly eliciting patient preferences for family involvement in decision making. Additional research is still needed to identify interventions to improve family member understanding of patient preferences regarding the decision-making process itself.

Project description:BackgroundAlthough research findings consistently find poor communication about medical procedures to be a key predictor of patient complaints, compensation claims, and malpractice lawsuits ("complaints"), there is insufficient evidence to determine if greater patient involvement could actually affect the inclination to complain.ObjectivesWe conducted an experimental case vignette survey that explores whether greater patient involvement in decision-making is likely to influence the intention to complain given different decisions and consequences.MethodsRandomized, national case vignette survey with various levels of patient involvement, decisions, and outcomes in a representative Danish sample of men. We used prostate specific antigen (PSA) screening in men aged 45 to 70 years as the intervention illustrated in 30 different versions of a mock clinical encounter. Versions differed in the amount of patient involvement, the decision made (PSA test or no PSA test), and the clinical outcomes (no cancer detected, detection of treatable cancer, and detection of non-treatable cancer). We measured respondents' inclination to complain about care in response to the scenarios on a 5-point Likert scale (from 1: very unlikely to 5: very likely).ResultsThe response rate was 30% (6,756 of 22,288). Across all scenarios, the likelihood of complaint increased if the clinical outcome was poor (untreatable cancer). Compared with scenarios that involved shared decision-making (SDM), neutral information, or nudging in favor of screening, the urge to complain increased if the patient was excluded from decision-making or if the doctor had nudged the patient to decline screening (mean Likert differences .12 to .16, p < .001). With neutral involvement or nudging in favor of intervention, the desire to complain depended highly on the decision reached and on the patient's course. This dependence was smaller with SDM.ConclusionsGreater patient involvement in decision-making appears to be associated with less intention to complain about health care, with SDM resulting in the greatest reduction in complaint likelihood.

Project description:BackgroundDespite health policy that promotes shared decision-making, it is not yet the norm in clinical practice. We aimed to assess how much shared decision-making Canadians experienced in health-related decisions in 2017.MethodsWe conducted a cross-sectional online survey in January 2018 with a Web-based panel of Canadians representing all 10 provinces. We assessed their involvement in health-related decisions made with a health care professional over the previous year by asking about 1) discussion of choice of treatment or care plan, 2) presentation of advantages and disadvantages, 3) exploration of ideas and preferences, 4) discussion of preferred option and 5) match between preferred and actual level of participation. We computed an average shared decision-making score (range 1 [never] to 5 [always]). We presented characteristics of participants and responses using descriptive statistics and explored variations across sociodemographic factors, jurisdictions, geographical areas and care settings (home care or not) using multivariate weighted regressions.ResultsOf the 1591 participants surveyed, 1010 (63.5%) reported receiving health care in the previous 12 months. The mean of the average shared decision-making score was 2.25/5 (standard deviation [SD] 1.16). After weighting, 42.8% of respondents reported that their health care professional often or always mentioned that they had a choice of treatment or care plan, 45.4% reported that advantages and disadvantages were often or always presented, 38.8% reported that they were often or always asked for their ideas or preferences, 40.2% reported that they were often or always asked about their preferred option, and 54.1% stated that their level of participation in decision-making often or always matched their preferred level of participation. Increasing age, rural setting, living in the province of Quebec and not being white significantly decreased the level of shared decision-making experienced. Older respondents (age ≥ 65 yr) receiving home care reported the least shared decision-making (mean score 1.7 [SD 0.5]).InterpretationCanadians in all 10 provinces experienced a low degree of shared decision-making in 2017, with variations across sociodemographic factors, jurisdictions, care settings and geographical areas. Further efforts to foster implementation of shared decision-making are needed and should take these variations into account.

Project description:BackgroundTo assess factors associated with the preferred role of the attending ophthalmologist in the decision-making processes before treating diabetic retinopathy (DR).MethodsCross-sectional study of 810 adults attending secondary diabetes care centers (NCT02311504). Diabetes patients were classified using a validated questionnaire in an ophthalmologist-dominant decision-making (ODM), shared decision-making (SDM) and patient-dominant decision-making (PDM) style. Multivariate logistic regression was performed to determine factors associated with the decision-making process.ResultsA majority of 74.3% patients preferred SDM between ophthalmologist and patient, 17.4% patients wanted ODM, delegating the decision-making process to the ophthalmologist, 8.3% preferred the autonomous style of PDM. Patients wanting ODM were older (OR = 1.2 per decade, p = 0.013), had a lower level of education (OR = 1.4, p = 0.001) and had a higher frequency of consultations per year (OR = 1.3, p = 0.022). Patients with better basic knowledge in DR and memorizing their HbA1c level showed a higher propensity for SDM (OR = 1.1, p = 0.037). Patients wanting PDM had a significantly higher education (OR = 1.3, p = 0.036) and a greater desire for receiving information from self-help groups (OR = 1.3, p = 0.015).ConclusionsThe first evaluation of the general patient wishes for the treatment of DR confirmed the concept of SDM, which was favored by three quarters. In particular, older patients with low educational attainment wanted to delegate the decision-making process to the ophthalmologist. Amelioration of ophthalmologic education in diabetic programs might take up patients' propensity for SDM. Regardless of the decision-making group, nearly all patients wanted the medical and scientific information to be transferred by and shared with the ophthalmologist.Trial registrationThe study was registered on www.clinicaltrials.gov (identifier: NCT02311504) on December 4th 2014.

Project description:BackgroundMedical decision-making is critical to patient survival and well-being. Patients with end stage renal disease (ESRD) are faced with incrementally complex decision-making throughout their treatment journey. The extent to which patients seek involvement in the decision-making process and factors which influence these in ESRD need to be understood.Methods535 ESRD patients were enrolled into the cross-sectional study arm and 30 patients who started dialysis were prospectively evaluated. Patients were enrolled into 3 groups- 'predialysis' (group A), 'in-centre' haemodialysis (HD) (group B) and self-care HD (93 % at home-group C) from across five tertiary UK renal centres. The Autonomy Preference Index (API) has been employed to study patient preferences for information-seeking (IS) and decision-making (DM). Demographic, psychosocial and neuropsychometric assessments are considered for analyses.Results458 complete responses were available. API items have high internal consistency in the study population (Cronbach's alpha > 0.70). Overall and across individual study groups, the scores for information-seeking and decision-making are significantly different indicating that although patients had a strong preference to be well informed, they were more neutral in their preference to participate in DM (p < 0.05). In the age, education and study group adjusted multiple linear regression analysis, lower age, female gender, marital status; higher API IS scores and white ethnicity background were significant predictors of preference for decision-making. DM scores were subdivided into tertiles to identify variables associated with high (DM > 70: and low DM (≤30) scores. This shows association of higher DM scores with lower age, lower comorbidity index score, higher executive brain function, belonging in the self-caring cohort and being unemployed. In the prospectively studied cohort of predialysis patients, there was no change in decision-making preference scores after commencement of dialysis.ConclusionESRD patients prefer to receive information, but this does not always imply active involvement in decision-making. By understanding modifiable and non-modifiable factors which affect patient preferences for involvement in healthcare decision-making, health professionals may acknowledge the need to accommodate individual patient preferences to the extent determined by the individual patient factors.

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Representativeness of personality and involvement preferences in a web-based survey on healthcare decision-making.

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Representativeness of personality and involvement preferences in a web-based survey on healthcare decision-making.

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