背景:在COVID-19大流行之前,加拿大人在重大不确定性的背景下面临与健康相关的决定。然而,人们对他们面临的决定类型和困难类型知之甚少。
目的:我们试图确定加拿大人的健康相关决策和决策需求。
方法:我们的研究是由研究人员和知识使用者共同设计的(例如,病人,临床医生)。由CHERRIES报告指南通知,我们从40万加拿大人的Leger消费者小组中随机抽取了两个在线调查。符合条件的参与者是成年人(18岁或以上),他们在过去12个月内为自己(成人)或其子女(父母)接受或正在接受任何健康服务。或患有认知障碍的老年人(护理人员)。我们使用渥太华决策支持框架提供的问题评估决策和决策需求,包括分别使用决策冲突量表和决策后悔量表的决策冲突和决策后悔。对自己决定的成年人或代表他人做出决定的成年人进行了描述性统计。重大决策冲突定义为总分>100分中的37.5分,重大决策遗憾定义为总分>100分中的25分。
结果:从2021年5月18日至6月4日,邀请了14,459名成年人和6542名父母/照顾者参加。邀请率分别为15.5%和28.3%;参与率,69.3%和28.7%;完成率,分别为97.3%和95.1%。该调查由1454名成年人和438名父母/照顾者以英语(84%)或法语(16%)完成。来自加拿大所有10个省和北部地区的受访者代表了不同的年龄,教育水平,民事地位,种族,家庭年收入。近30%的人自我认定为边缘化群体的成员。最常见的决定是(成人;父母/照顾者):COVID-19疫苗接种(34%;20%),管理健康状况(17%;11%),其他COVID-19决定(11%;19%),精神保健(9%;6%)和药物治疗(8%;5%)。看护者还报告了有关将家庭成员搬入/离开疗养院或养老院的决定(11%)。成人(22.2%)和父母/照顾者(21.7%)存在重大决策冲突。使决策困难的因素是担心选择错误的选择(38%;42%),担心感染COVID-19(35%;40%),公共卫生限制(29%;36%),信息过载(21%;18%),难以将错误信息与科学证据分开(20%;18%),与临床医生讨论决策困难(15%;12%)。对于1318名成年人和366名父母/照顾者,他们决定,26.8%和34.2%有重大决策遗憾。超过50%的受访者在没有考虑临床医生意见的情况下独自做出决定。
结论:在COVID-19大流行期间,回应调查的加拿大人面临着一些与健康相关的新决定。许多人报告说,决策需求未得到满足,导致重大的决策冲突和决策遗憾。可以设计干预措施来满足他们的决策需求,并支持面临新的健康相关决策的患者。
背景:
Never before COVID-19 had Canadians faced making health-related decisions in a context of significant uncertainty. However, little is known about which type of decisions and the types of difficulties that they faced.
We sought to identify the health-related decisions and decisional needs of Canadians.
Our study was codesigned by researchers and knowledge users (eg, patients, clinicians). Informed by the CHERRIES (the Checklist for Reporting Results of Internet E-Surveys) reporting guideline, we conducted 2 online surveys of random samples drawn from the Leger consumer panel of 400,000 Canadians. Eligible participants were adults (≥18 years) who received or were receiving any health services in the past 12 months for themselves (adults) or for their child (parent) or senior with cognitive impairment (caregiver). We assessed decisions and decisional needs using questions informed by the Ottawa Decision Support Framework, including decisional conflict and decision regret using the Decision Conflict Scale (DCS) and the Decision Regret Scale (DRS), respectively. Descriptive statistics were conducted for adults who had decided for themselves or on behalf of someone else. Significant decisional conflict (SDC) was defined as a total DCS score of >37.5 out of 100, and significant decision regret was defined as a total DRS score of >25 out of 100.
From May 18 to June 4, 2021, 14,459 adults and 6542 parents/caregivers were invited to participate. The invitation view rate was 15.5% (2236/14,459) and 28.3% (1850/6542); participation rate, 69.3% (1549/2236) and 28.7% (531/1850); and completion rate, 97.3% (1507/1549) and 95.1% (505/531), respectively. The survey was completed by 1454 (97.3%) adults and 438 (95.1%) parents/caregivers in English (1598/1892, 84.5%) or French (294/1892, 15.5%). Respondents from all 10 Canadian provinces and the northern territories represented a range of ages, education levels, civil statuses, ethnicities, and annual household income. Of 1892 respondents, 541 (28.6%) self-identified as members of marginalized groups. The most frequent decisions were (adults vs parents/caregivers) as follows: COVID-19 vaccination (490/1454, 33.7%, vs 87/438, 19.9%), managing a health condition (253/1454, 17.4%, vs 47/438, 10.7%), other COVID-19 decisions (158/1454, 10.9%, vs 85/438, 19.4%), mental health care (128/1454, 8.8%, vs 27/438, 6.2%), and medication treatments (115/1454, 7.9%, vs 23/438, 5.3%). Caregivers also reported decisions about moving family members to/from nursing or retirement homes (48/438, 11.0%). Adults (323/1454, 22.2%) and parents/caregivers (95/438, 21.7%) had SDC. Factors making decisions difficult were worrying about choosing the wrong option (557/1454, 38.3%, vs 184/438, 42.0%), worrying about getting COVID-19 (506/1454, 34.8%, vs 173/438, 39.5%), public health restrictions (427/1454, 29.4%, vs 158/438, 36.1%), information overload (300/1454, 20.6%, vs 77/438, 17.6%), difficulty separating misinformation from scientific evidence (297/1454, 20.4%, vs 77/438, 17.6%), and difficulty discussing decisions with clinicians (224/1454, 15.4%, vs 51/438, 11.6%). For 1318 (90.6%) adults and 366 (83.6%) parents/caregivers who had decided, 353 (26.8%) and 125 (34.2%) had significant decision regret, respectively. In addition, 1028 (50%) respondents made their decision alone without considering the opinions of clinicians.
During COVID-19, Canadians who responded to the survey faced several new health-related decisions. Many reported unmet decision-making needs, resulting in SDC and decision regret. Interventions can be designed to address their decisional needs and support patients facing new health-related decisions.