'The burden is very much on yourself': A qualitative study to understand the illness and treatment burden of hearing loss across the life course.

INTRODUCTION: Hearing loss is a chronic health condition that rises sharply with age. The way people respond to and cope with health conditions is influenced by their capacity to perform illness and treatment-related work. The aim was to explore the cumulative burdens of living with hearing loss and the resources mobilised to ease the burdens. METHODS: A qualitative design was used with semi-structured interviews (online or in-person) with participants recruited through audiology services and nonclinical services, such as lip-reading classes. Forty-six participants with hearing loss aged between 16 and 96 years were interviewed. An abductive approach, informed by May et al.'s burden of treatment theory, was used to analyse the data. RESULTS: The illness burden involved participants working to make sense of their hearing loss, engaging in emotional work in response to changes in sound, social interactions and identity and coping with the daily frustrations required to communicate with others. Abandonment and uncertainty characterised the treatment burden; participants engaged in emotional work to adjust to hearing technology and deal with the uncertainty of how their hearing might progress. To ameliorate the burdens, participants drew on internal resources (psychological, health literacy, cognitive) and external resources (social support, financial, information, technology). CONCLUSIONS: The workload of hearing loss appears largely devolved to the patient and is not always visible. Our work indicates the need to widen approaches in audiological care through the implementation of lifeworld-led care, family-centred care and peer support to build support for those with hearing loss. PATIENT OR PUBLIC CONTRIBUTION: We developed the project in consultation with members of the public who have lived experience of hearing loss recruited through Aston University and volunteer links to audiology services. We also consulted people more likely to be affected by hearing loss adults including adults with learning disabilities, older adults in residential care and people from South Asia (Bangladeshi, Indian and Pakistani communities). These individuals commented on the study aims, interview schedule and participant recruitment practices. One of our co-authors (expert by experience) contributed to the development and interpretation of themes and preparation of the final manuscript.

Influence of lived experience on risk perception among women who received a breast cancer polygenic risk score: 'Another piece of the pie'.

Polygenic risk scores (PRS) are personalized assessments of disease risk based on the cumulative effect of common low-risk genetic variants. PRS have been shown to accurately predict women's breast cancer risk and are likely to be incorporated into personalized breast cancer risk management programs. However, there are few studies investigating the individual impact of receiving a breast cancer PRS. Existing studies have not demonstrated significant changes in perceived risk or risk management behaviors after receipt of polygenic risk information. The aim of this qualitative study was to explore how women with a family history of breast cancer construct breast cancer risk perceptions after receipt of a breast cancer PRS. Unaffected women with a family history of breast cancer who had not previously received genetic counseling regarding their breast cancer risk were invited to participate in this study. In-depth, semi-structured interviews were conducted with 20 women who attended a familial cancer clinic in the Australian states of Victoria and Tasmania. Data were analyzed using an inductive thematic approach. Women's lived experience played a significant role in the construction and maintenance of their breast cancer risk perception. Women's pre-existing risk perceptions were informed by their family history and their knowledge that breast cancer is a multifactorial disease. Knowing that breast cancer is a multifactorial disease enabled most women to integrate genetic information with their pre-existing notions of risk. Women reported that the information they received was consistent with their existing notions of personal risk and screening advice. Therefore, the PRS did not lead to a change in perceived risk or risk management behaviors for most women. The results of this study provide insight into how polygenic risk information is integrated with pre-existing notions of risk, which will inform its implementation into clinical practice.

Supporting and preparing patients for radiotherapy: Patients' and radiation therapists' perspectives on their one-to-one consultations.

OBJECTIVE: Patients are often anxious and lack knowledge of radiotherapy prior to commencing treatment. Evidence-based interventions are required to reduce patient anxiety and increase patient preparation before treatment. This study is part of a larger project examining the effectiveness of an innovative preparatory intervention "RT Prepare," to reduce patient psychological distress prior to treatment for breast cancer. This study aimed to explore patients' and RTs' perceptions about the "RT Prepare" intervention and was conducted to assist with refinement of the intervention for future implementation. METHODS: Semi-structured interviews were conducted with patients and radiation therapists (RTs) to elicit their perspectives on the "RT Prepare" intervention. Thematic analysis was used to analyse the data. RESULTS: Telephone interviews were conducted with 21 patients who had received the intervention and 15 RTs who had delivered the intervention. Patients and RTs described the intervention positively and highlighted that it was beneficial for preparing patients for treatment planning and treatment. The overarching themes were communication skills; preparation; information provision and dedicated space and time. CONCLUSION: RT Prepare was well received by patients and RTs. Practice implications Based on the results of this study and our quantitative findings, implementation of the intervention would be beneficial for both patients and RTs.

What do radiation therapists know about health literacy and the strategies to improve it for patients? A qualitative study.

PURPOSE: Low health literacy leads to poor knowledge and understanding of health information, delayed diagnosis, lower use of preventative medicines/health services, increased likelihood of hospitalisation, and increased patient anxiety. Effective communication facilitates patient understanding and helps patients to manage the adverse side-effects associated with treatment. It is not yet known whether radiation therapists in Ireland tailor their communication to match a patient's health literacy level. The purpose of this research was to investigate radiation therapists' knowledge and awareness of health literacy and perceptions of their role in supporting patients with low health literacy. METHODS: Semi-structured interviews were conducted with sixteen radiation therapists working in four radiotherapy departments in Ireland. Data were analysed using the framework approach. RESULTS: Through discussions with participants, it was apparent that radiation therapists had limited knowledge of the concept of health literacy. Common themes arose from the interviews with four key themes identified: 1. Strategies used to identify patients' health literacy 2. Perceived effect of low health literacy 3. Obstacles faced when addressing low health literacy 4. Recommendations to support lower health literacy groups CONCLUSION: Currently, radiation therapists show some knowledge and awareness of health literacy, but an increased awareness of the prevalence of low health literacy and a structured approach to supporting patients would allow radiation therapists to more effectively communicate with patients, thus improving their treatment experience and reducing the risk of adverse outcomes.

A low literacy targeted talking book about radiation therapy for cancer: development and acceptability.

PURPOSE: To develop a low literacy talking book (written book with accompanying audio-recording) about radiation therapy and explore its acceptability with patients and caregivers. METHOD: The talking book was developed iteratively using low literacy design principles and a multidisciplinary committee comprising consumers and experts in radiation oncology, nursing, behavioural sciences, and linguistics. It contained illustrations, photos, and information on: treatment planning, daily treatment, side effects, psychosocial health, and a glossary of medical terms. Semi-structured interviews were conducted with patients who self-reported low functional health literacy and caregivers to explore their views on the resource. Thematic analysis using a framework approach informed the analysis. RESULTS: Participants were very satisfied with the content, illustrations, and language in the resource. Most were unfamiliar with the term 'talking book', but liked the option of different media (text and audio). The resource was seen as facilitating communication with the cancer care team by prompting question-asking and equipping patients and their families with knowledge to communicate confidently. CONCLUSIONS: The low literacy talking book was well accepted by patients and their caregivers. The next step is to examine the effect of the resource on patients' knowledge, anxiety, concerns, and communication with the cancer care team.

What information is communicated by radiation therapists to patients during education sessions on the first day of treatment?

This study examined the content covered by radiation therapists (RTs) during education sessions; the frequency and types of questions asked by patients; and the relationship between patient characteristics and the number of questions asked. Fifty-eight education sessions were audio-recorded and transcribed verbatim. A coding scheme was developed to examine the frequency of topics covered. It comprised 16 topics under four themes: (a) treatment schedule, (b) procedural information, (c) treatment-related side effects and (d) who will be involved in treatment provision. All education sessions covered information about the treatment plan (n = 58, 100%), and the majority described procedural information about what happens in the treatment room (n = 56, 97%). Least information was given about who will be providing treatment. On average, patients asked a mean of 6 questions (SD = 4.95; range = 0-28). Most frequently asked questions concerned the general treatment (logistics, schedule), accounting for 67% of all questions asked. The least common types of questions were related to the impact of treatment (6%). There were no statistically significant differences in the total number of questions and patient demographics. Patients are provided with most, but not all, of the recommended information. Tailoring of information by RTs was enabled in response to questions asked.

Development and Pilot Testing of a Decision Aid for Genomic Research Participants Notified of Clinically Actionable Research Findings for Cancer Risk.

Germline genomic testing is increasingly used in research to identify genetic causes of disease, including cancer. However, there is evidence that individuals who are notified of clinically actionable research findings have difficulty making informed decisions regarding uptake of genetic counseling for these findings. This study aimed to produce and pilot test a decision aid to assist participants in genomic research studies who are notified of clinically actionable research findings to make informed choices regarding uptake of genetic counseling. Development was guided by published literature, the International Patient Decision Aid Standards, and the expertise of a steering committee of clinicians, researchers, and consumers. Decision aid acceptability was assessed by self-report questionnaire. All 19 participants stated that the decision aid was easy to read, clearly presented, increased their understanding of the implications of taking up research findings, and would be helpful in decision-making. While low to moderate levels of distress/worry were reported after reading the booklet, a majority of participants also reported feeling reassured. All participants would recommend the booklet to others considering uptake of clinically actionable research findings. Results indicate the decision aid is acceptable to the target audience, with potential as a useful decision support tool for genomic research participants.

Preconception counselling for low health literate women: an exploration of determinants in the Netherlands.

BACKGROUND: Women from lower socioeconomic groups tend to be at greater risk of adverse perinatal outcomes, but are less likely to participate in preconception counselling compared to higher socioeconomic groups. This could be partly because of their limited skills to assess, understand and use health related information in ways that promote and maintain good health (health literacy skills). In this study we explored determinants of participation in preconception counselling among women with low health literacy in The Netherlands. METHODS: Potential determinants of participation in preconception counselling were derived from the literature, and mapped onto a theoretical framework, which was tested for perceived relevance and completeness in an expert review (n = 20). The framework was used to prepare face-to-face interviews with women with low health literacy and a wish to conceive (n = 139). In the interviews we explored preconception counselling awareness, knowledge, considerations, subjective norms, self-efficacy, attitude, and intention. Linear regression analyses were used to test associations with intention to participate in preconception counselling. RESULTS: Most women (75%) were unaware of the concept of preconception counselling and the provision of counselling, even if they lived in areas where written invitations had been disseminated. Common considerations for participation were: preparation for pregnancy; perceived lack of information; and problems in a previous pregnancy. Considerations not to participate were mostly related to perceived sufficient knowledge and perceived low risk of perinatal problems. Respondents generally had a positive attitude towards participation in preconception counselling for themselves, and 41% reported that they would participate in preconception counselling. CONCLUSION: Women with low health literacy were generally unaware of the concept and provision of preconception counselling, but seemed to be interested in participation. Further research should investigate how to effectively reach and inform this group about preconception counselling. This knowledge is essential for evidence-based development of interventions to increase the accessibility and understanding of preconception counselling.

Qualitative insights into the experience of teaching shared decision making within adult education health literacy programmes for lower-literacy learners.

BACKGROUND: Enhancing health literacy can play a major role in improving healthcare and health across the globe. To build higher-order (communicative/critical) health literacy skills among socially disadvantaged Australians, we developed a novel shared decision making (SDM) training programme for adults with lower literacy. The programme was delivered by trained educators within an adult basic education health literacy course. OBJECTIVE: To explore the experience of teaching SDM within a health literacy programme and investigate whether communicative/critical health literacy content meets learner needs and teaching and institutional objectives. DESIGN AND PARTICIPANTS: Qualitative interview study with 11 educators who delivered the SDM programme. Transcripts were analysed using the Framework approach; a matrix-based method of thematic analysis. RESULTS: Teachers noted congruence in SDM content and the institutional commitment to learner empowerment in adult education. The SDM programme was seen to offer learners an alternative to their usual passive approach to healthcare decision making by raising awareness of the right to ask questions and consider alternative test/treatment options. Teachers valued a structured approach to training building on foundational skills, with language reinforcement and take-home resources, but many noted the need for additional time to develop learner understanding and cover all aspects of SDM. Challenges for adult learners included SDM terminology, computational numerical risk tasks and understanding probability concepts. DISCUSSION AND CONCLUSIONS: SDM programmes can be designed in a way that both supports teachers to deliver novel health literacy content and empowers learners. Collaboration between adult education and healthcare sectors can build health literacy capacity of those most in need.

Evaluation of an Australian health literacy training program for socially disadvantaged adults attending basic education classes: study protocol for a cluster randomised controlled trial.

BACKGROUND: People with low literacy and low health literacy have poorer health outcomes. Literacy and health literacy are distinct but overlapping constructs that impact wellbeing. Interventions that target both could improve health outcomes. METHODS/DESIGN: This is a cluster randomised controlled trial with a qualitative component. Participants are 300 adults enrolled in basic language, literacy and numeracy programs at adult education colleges across New South Wales, Australia. Each adult education institute (regional administrative centre) contributes (at least) two classes matched for student demographics, which may be at the same or different campuses. Classes (clusters) are randomly allocated to receive either the health literacy intervention (an 18-week program with health knowledge and skills embedded in language, literacy, and numeracy training (LLN)), or the standard Language Literacy and Numeracy (LLN) program (usual LLN classes, specifically excluding health content). The primary outcome is functional health literacy skills - knowing how to use a thermometer, and read and interpret food and medicine labels. The secondary outcomes are self-reported confidence, more advanced health literacy skills; shared decision making skills, patient activation, health knowledge and self-reported health behaviour. Data is collected at baseline, and immediately and 6 months post intervention. A sample of participating teachers, students, and community health workers will be interviewed in-depth about their experiences with the program to better understand implementation issues and to strengthen the potential for scaling up the program. DISCUSSION: Outcomes will provide evidence regarding real-world implementation of a health literacy training program with health worker involvement in an Australian adult education setting. The evaluation trial will provide insight into translating and scaling up health literacy education for vulnerable populations with low literacy. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12616000213448 .

Socioeconomic Differences in Informed Decisions About Down Syndrome Screening: A Systematic Review and Research Agenda.

Supporting pregnant women to make informed choices about Down syndrome screening is widely endorsed. We reviewed the literature on: (a) the association between socioeconomic position and informed choices and decision-making about Down syndrome screening, and (b) the possible mediating variables (e.g., health literacy, numeracy skills, behavioral and communication variables) that might explain the relationship. EMBASE, MEDLINE, PubMed, CINAHL, and PsycINFO were searched from January 1999 to September 2014. The methodological quality of studies was determined by predefined criteria regarding the research aims, study design, study population and setting, measurement tools, and statistical analysis. A total of 33 studies met the inclusion criteria. Women from lower socioeconomic groups experience greater difficulties making informed choices about Down syndrome screening compared to women from higher socioeconomic groups. Most studies focus on individual dimensions of informed decision-making rather than assessing elements in conjunction with one another. Few studies have explored why there are socioeconomic differences in women's ability to make informed screening decisions. Future work is needed to identify mediating variables in this pathway. Systematic evidence-based intervention development to improve communication, understanding, and decision-making about Down syndrome screening is needed to ensure that women have an equal opportunity to make an informed choice about screening regardless of their socioeconomic position.

Instrumental support to facilitate hepatitis C treatment adherence: working around shortfalls in shared-care.

Adherence to treatment for hepatitis C virus (HCV) infection is associated with the successful eradication of infection. However, patients often have difficulty adhering to HCV treatment because of factors such as the psychiatric side effects of regimens and social disadvantage. Commonly, health professionals including specialist physicians, nurses, social workers and psychologists work together under a multidisciplinary model of shared-care to support patients' adherence to HCV treatment. In some HCV treatment clinics, shared-care is not always available, or only partially implemented and this has implications for patient adherence. To explore the facilitators of adherence, an interview-based study was conducted in 2012 with a purposive sample of Australian physicians and nurses (N = 20). The findings reveal that when comprehensive shared-care was limited or unavailable, physicians and nurses filled in the gaps by assuming roles outside of their expertise to help patients adhere to HCV treatment. Physicians and nurses applied instrumental support strategies based on psychosocial interventions, namely patient advocacy, pragmatic problem-solving, treatment engagement and emotional support. These strategies were provided by dedicated physicians and nurses to address shortfalls in multidisciplinary shared-care. Although these interventions were reported to assist adherence, there is an increased risk of complications when physicians and nurses move beyond the bounds of their disciplinary training, for example, to assess and manage patients' psychiatric side effects or advocate on their behalf for social services. Future research should measure the effectiveness of instrumental support strategies on HCV treatment adherence, and explore the costs associated with physicians and nurses providing instrumental support in the absence of comprehensive multidisciplinary shared-care.

Informed choice in bowel cancer screening: a qualitative study to explore how adults with lower education use decision aids.

BACKGROUND: Offering informed choice in screening is increasingly advocated, but little is known about how evidence-based information about the benefits and harms of screening influences understanding and participation in screening. OBJECTIVE: We aimed to explore how a bowel cancer screening decision aid influenced decision making and screening behaviour among adults with lower education and literacy. METHODS: Twenty-one men and women aged 55-64 years with lower education levels were interviewed about using a decision aid to make their screening decision. Participants were purposively selected to include those who had and had not made an informed choice. RESULTS: Understanding the purpose of the decision aid was an important factor in whether participants made an informed choice about screening. Participants varied in how they understood and integrated quantitative risk information about the benefits and harms of screening into their decision making; some read it carefully and used it to justify their screening decision, whereas others dismissed it because they were sceptical of it or lacked confidence in their own numeracy ability. Participants' prior knowledge and beliefs about screening influenced how they made sense of the information. DISCUSSION AND CONCLUSIONS: Participants valued information that offered them a choice in a non-directive way, but were concerned that it would deter people from screening. Healthcare providers need to be aware that people respond to screening information in diverse ways involving a range of literacy skills and cognitive processes.

Supporting patients with low health literacy: what role do radiation therapists play?

PURPOSE: Health literacy plays a key role in a patient's ability to use health information and services, and can affect health outcomes. This study aimed to explore radiation therapists' perspectives on how they support people with lower health literacy who are undergoing radiotherapy. METHODS: Semi-structured interviews were conducted with 25 radiation therapists working in radiation oncology departments in New South Wales, Australia. RESULTS: The four key themes were (1) the process of identifying a patient with low health literacy, (2) the perceived consequences of low health literacy, (3) managing and responding to the needs of different health literacy groups and (4) recommendations to address low health literacy in radiotherapy. Radiation therapists appeared to make an informal, intuitive judgment about a patient's health literacy, using a variety of verbal and non-verbal cues as well as impromptu conversations with the multi-disciplinary team. Patients perceived to have lower health literacy were described as having greater difficulties assimilating knowledge and engaging in self-care. Although participants reported communicating to patients at a basic level initially, they subsequently tailored their communication to match a patient's health literacy. Strategies reported to communicate to low health literacy groups ranged from using lay language with minimal medical terminology, using visual aids (photos), using analogies, reiterating information and asking family members with higher literacy to attend consultations. CONCLUSION: A more structured approach to supporting patients with low health literacy and integrating health literacy training in radiation oncology departments may help to minimise the adverse outcomes typically experienced by this population.

Addressing health literacy in patient decision aids.

BACKGROUND: Effective use of a patient decision aid (PtDA) can be affected by the user's health literacy and the PtDA's characteristics. Systematic reviews of the relevant literature can guide PtDA developers to attend to the health literacy needs of patients. The reviews reported here aimed to assess: METHODS: We reviewed literature for evidence relevant to these two aims. When high-quality systematic reviews existed, we summarized their evidence. When reviews were unavailable, we conducted our own systematic reviews. RESULTS: Aim 1: In an existing systematic review of PtDA trials, lower health literacy was associated with lower patient health knowledge (14 of 16 eligible studies). Fourteen studies reported practical design strategies to improve knowledge for lower health literacy patients. In our own systematic review, no studies reported on values clarity per se, but in 2 lower health literacy was related to higher decisional uncertainty and regret. Lower health literacy was associated with less desire for involvement in 3 studies, less question-asking in 2, and less patient-centered communication in 4 studies; its effects on other measures of patient involvement were mixed. Only one study assessed the effects of a health literacy intervention on outcomes; it showed that using video to improve the salience of health states reduced decisional uncertainty. Aim 2: In our review of 97 trials, only 3 PtDAs overtly addressed the needs of lower health literacy users. In 90% of trials, user health literacy and readability of the PtDA were not reported. However, increases in knowledge and informed choice were reported in those studies in which health literacy needs were addressed. CONCLUSION: Lower health literacy affects key decision-making outcomes, but few existing PtDAs have addressed the needs of lower health literacy users. The specific effects of PtDAs designed to mitigate the influence of low health literacy are unknown. More attention to the needs of patients with lower health literacy is indicated, to ensure that PtDAs are appropriate for lower as well as higher health literacy patients.

The Risk-Reducing Effect of Aspirin in Lynch Syndrome Carriers: Development and Evaluation of an Educational Leaflet.

Carriers of germline mutations in genes associated with Lynch syndrome are at increased risk for colorectal, endometrial, ovarian, and other cancers. There is evidence that daily consumption of aspirin may reduce cancer risk in these individuals. There is a need for educational resources to inform carriers of the risk-reducing effects of aspirin or to support decision-making. An educational leaflet describing the risks and benefits of using aspirin as risk-reducing medicine in carriers of Lynch-syndrome-related mutations is developed and pilot tested in 2017. Carriers are ascertained through a familial cancer clinic and surveyed using a mailed, self-administered questionnaire. The leaflet is highly rated for its content, clarity, length, relevance, and visual appeal by more than 70% of the participants. Most participants (91%) report "a lot" or "quite a bit" of improvement in perceived understanding in knowledge about who might benefit from taking aspirin, its benefits, how long to take it, the reduction in bowel cancer risk, and the optimal dosage. A few (14%) participants seek more information on the dosage of aspirin. This leaflet will be useful as an aid to facilitate discussion between patients and their health care professionals about the use of aspirin as a risk-reducing medication.

Recovering and rebuilding after COVID-19: What are the best ways to support medical radiation science students?

The Covid-19 pandemic and lockdown periods have impacted Medical Radiation Science (MRS) students professionally and personally. This Editorial provides commentary on two papers that generate discussion on how MRS students can be supported during these challenging times. We highlight how Universities and clinical departments can support students through tailored and proactive support, building resilience and peer group supervision.

Do Personal Stories Make Patient Decision Aids More Effective? An Update from the International Patient Decision Aids Standards.

BACKGROUND: This article evaluates the evidence for the inclusion of patient narratives in patient decision aids (PtDAs). We define patient narratives as stories, testimonials, or anecdotes that provide illustrative examples of the experiences of others that are relevant to the decision at hand. METHOD: To evaluate the evidence for the effectiveness of narratives in PtDAs, we conducted a narrative scoping review of the literature from January 2013 through June 2019 to identify relevant literature published since the last International Patient Decision Aid Standards (IPDAS) update in 2013. We considered research articles that examined the impact of narratives on relevant outcomes or described relevant theoretical mechanisms. RESULTS: The majority of the empirical work on narratives did not measure concepts that are typically found in the PtDA literature (e.g., decisional conflict). Yet, a few themes emerged from our review that can be applied to the PtDA context, including the impact of narratives on relevant outcomes (knowledge, behavior change, and psychological constructs), as well as several theoretical mechanisms about how and why narratives work that can be applied to the PtDA context. CONCLUSION: Based on this evidence update, we suggest that there may be situations when narratives could enhance the effectiveness of PtDAs. The recent theoretical work on narratives has underscored the fact that narratives are a multifaceted construct and should no longer be considered a binary option (include narratives or not). However, the bottom line is that the evidence does not support a recommendation for narratives to be a necessary component of PtDAs.

Addressing Health Literacy in Patient Decision Aids: An Update from the International Patient Decision Aid Standards.

BACKGROUND: There is increasing recognition of the importance of addressing health literacy in patient decision aid (PtDA) development. PURPOSE: An updated review as part of IPDAS 2.0 examined the extent to which PtDAs are designed to meet the needs of people with low health literacy/socially-disadvantaged populations. DATA SOURCES: Reference lists of Cochrane reviews of randomized controlled trials (RCTs) of PtDAs (2014, 2017, and upcoming 2021 versions). STUDY SELECTION: RCTs that assessed the impact of PtDAs on low health literacy or other socially-disadvantaged groups (i.e., ≥50% participants from socially-disadvantaged groups and/or subgroup analysis in socially-disadvantaged group/s). DATA EXTRACTION: Two researchers independently extracted data into a standardized form including PtDA development and evaluation details. We searched online repositories and emailed authors to access PtDAs to verify grade reading level, understandability, and actionability. DATA SYNTHESIS: Twenty-five of 213 RCTs met the inclusion criteria, illustrating that only 12% of studies addressed the needs of low health literacy or other socially-disadvantaged groups. Grade reading level was calculated in 8 of 25 studies (33%), which is recommended in previous IPDAS guidelines. We accessed and independently assessed 11 PtDAs. None were written at sixth-grade level or below. Ten PtDAs met the recommended threshold for understandability, but only 5 met the recommended threshold for actionability. We also conducted a post hoc subgroup meta-analysis and found that knowledge improvements after receiving a PtDA were greater in studies that reported using strategies to reduce cognitive demand in PtDA development compared with studies that did not (χ2 = 14.11, P = 0.0002, I2 = 92.9%). LIMITATIONS: We were unable to access 13 of 24 PtDAs. Conclusions. Greater attention to health literacy and socially-disadvantaged populations is needed in the field of PtDAs to ensure equity in decision support.

A Systematic Review and Meta-Analysis of Patient Decision Aids for Socially Disadvantaged Populations: Update from the International Patient Decision Aid Standards (IDPAS).

BACKGROUND: The effectiveness of patient decision aids (PtDAs) and other shared decision-making (SDM) interventions for socially disadvantaged populations has not been well studied. PURPOSE: To assess whether PtDAs and other SDM interventions improve outcomes or decrease health inequalities among socially disadvantaged populations and determine the critical features of successful interventions. DATA SOURCES: MEDLINE, CINAHL, Cochrane, PsycINFO, and Web of Science from inception to October 2019. Cochrane systematic reviews on PtDAs. STUDY SELECTION: Randomized controlled trials of PtDAs and SDM interventions that included socially disadvantaged populations. DATA EXTRACTION: Independent double data extraction using a standardized form and the Template for Intervention Description and Replication checklist. DATA SYNTHESIS: Twenty-five PtDA and 13 other SDM intervention trials met our inclusion criteria. Compared with usual care, PtDAs improved knowledge (mean difference = 13.91, 95% confidence interval [CI] 9.01, 18.82 [I2 = 96%]) and patient-clinician communication (relative risk = 1.62, 95% CI 1.42, 1.84 [I2 = 0%]). PtDAs reduced decisional conflict (mean difference = -9.59; 95% CI -18.94, -0.24 [I2 = 84%]) and the proportion undecided (relative risk = 0.39; 95% CI 0.28, 0.53 [I2 = 75%]). PtDAs did not affect anxiety (standardized mean difference = 0.02, 95% CI -0.22, 0.26 [I2 = 70%]). Only 1 trial looked at clinical outcomes (hemoglobin A1C). Five of the 12 PtDA studies that compared outcomes by disadvantaged standing found that outcomes improved more for socially disadvantaged participants. No evidence indicated which intervention characteristics were most effective. Results were similar for SDM intervention trials. LIMITATIONS: Sixteen PtDA studies had an overall unclear risk of bias. Heterogeneity was high for most outcomes. Most studies only had short-term follow-up. CONCLUSIONS: PtDAs led to better outcomes among socially disadvantaged populations but did not reduce health inequalities. We could not determine which intervention features were most effective.[Box: see text].