bims-paceca Biomed News
on Patient-centred care
Issue of 2022–06–05
seventeen papers selected by
Rob Penfold, Queensland Health



  1. Am J Occup Ther. 2022 May 01. pii: 7603090010. [Epub ahead of print]76(3):
      Shared decision making (SDM), or the process by which clients actively work with health care professionals to make informed decisions about health care options, is critical to value-based, client-centered care and representing client preferences as part of the occupational therapy process. With the enactment of the Patient Protection and Affordable Care Act and the continued focus on patient-centered care models and quality indicators, occupational therapy practitioners must be prepared to engage in SDM. In this Health Policy Perspectives article, we provide considerations about how occupational therapy practitioners may use Choosing Wisely® recommendations to engage clients in SDM and provide high-quality evidence-based care.
    DOI:  https://doi.org/10.5014/ajot.2022.050065
  2. Patient Educ Couns. 2022 May 23. pii: S0738-3991(22)00248-8. [Epub ahead of print]
       OBJECTIVE: To systematically evaluate health literacy (HL) interventions in chronic conditions by exploring theoretical perspectives, intervention content and effectiveness.
    METHOD: We searched MEDLINE, Cochrane, CINAHL, EMBASE, ERIC, Web of Science and PsycINFO. Standardised systematic review methods were used, and sequences informing our research question were extracted and analysed. The study includes a descriptive summary of the included papers.
    RESULTS: We included 39 unique interventions, with diabetes and heart disease as the most targeted chronic conditions. Fifty-four percent of papers included a definition of HL, but the studies showed significant heterogeneity of theoretical underpinnings, modes, measures and content. We identified 23 HL measures, mostly assessing functional HL. The HL interventions were often more complex than the measures indicated. A significant change in HL was found in 28 studies. Study quality was generally poor.
    CONCLUSIONS: Interventions optimizing HL appear important to improve health outcomes in chronic conditions. To ensure cumulative knowledge development of this field we need theory-based interventions, consistency in methods and more tailored and comprehensive measures to capture the interventions' complexity.
    PRACTICE IMPLICATIONS: A more valid understanding of HL interventions and measurements is needed to reach an agreed understanding of their components and intentions.
    Keywords:  Chronic diseases; Health literacy; Interventions; Systematic review
    DOI:  https://doi.org/10.1016/j.pec.2022.05.008
  3. Eur J Public Health. 2022 May 28. pii: ckac056. [Epub ahead of print]
       BACKGROUND: d/Deaf people suffer from inequitable access to healthcare and health information. This results in worse health literacy and poorer mental and physical health compared to hearing populations. Various interventions aimed at improving health equity for d/Deaf people have been documented but not systematically analyzed. The purpose of this systematic review is to obtain a global overview of what we know about interventions aimed at improving health equity for d/Deaf people.
    METHODS: Medline Ovid SP, Embase, CINAHL EBSCO, PsycINFO Ovid SP, Central-Cochrane Library Wiley and Web of Science were searched for relevant studies on access to healthcare and health-related interventions for d/Deaf people following the PRISMA-equity guidelines. We focused on interventions aimed at achieving equitable care and equitable access to health information for d/Deaf people.
    RESULTS: Forty-six studies were identified and analyzed. Seven categories of interventions facing healthcare or health education inequities emerged: use of Sign Language (1), translation, validation and identification of clinical tools and scales (2), healthcare provider training program (3), development of adapted healthcare facilities (4), online interventions (5), education programs (6) and videos (7). Despite some methodological limitations or lack of data, these interventions seem relevant to improve equity of care and health education for d/Deaf people.
    CONCLUSION: Interventions that promote healthcare equity, health education amongst d/Deaf patients and healthcare provider awareness of communication barriers and cultural sensitivity show promise in achieving more equitable care for d/Deaf patients. Meaningful engagement of d/Deaf individuals in the conceptualization, implementation and evaluation of health-related interventions is imperative.
    DOI:  https://doi.org/10.1093/eurpub/ckac056
  4. Res Involv Engagem. 2022 Jun 02. 8(1): 23
       BACKGROUND: Peer-reviewed scientific publications and congress abstracts are typically written by scientists for specialist audiences; however, patients and other non-specialists are understandably interested in the potential implications of research and what they may mean for them. Plain language summaries (PLS)-summaries of scientific articles in easy-to-read language-are emerging as a valuable addition to traditional scientific publications. Co-creation of PLS with the intended audience is key to ensuring a successful outcome, but practical guidance on how to achieve this has been lacking.
    METHODS: Building on the Patient Engagement (PE) Quality Guidance previously developed by Patient Focused Medicines Development (PFMD), a multi-stakeholder working group (WG) of individuals with patient engagement experience and/or expertise in PLS was established to develop further activity-specific guidance. PLS guidance was developed through a stepwise approach that included several rounds of co-creation, public consultation (two rounds), internal review and a final external review. The iterative development process incorporated input from a wide variety of stakeholders (patient representatives, industry members, publishers, researchers, medical communications agencies, and public officials involved in research bodies). Feedback from each step was consolidated by the WG and used for refining the draft guidance. The final draft was then validated through external consultation.
    RESULTS: The WG comprised 14 stakeholders with relevant experience in PE and/or PLS. The WG developed a set of 15 ethical principles for PLS development. These include the necessity for objective reporting and the absence of any promotional intent, the need for balanced presentation, the importance of audience focus, the need to apply health literacy principles, and the importance of using inclusive and respectful language. The first public consultation yielded 29 responses comprising 478 comments or edits in the shared draft guidance. The second public consultation was an online survey of 14 questions which had 32 respondents. The final 'How-To' Guide reflects feedback received and provides a rational, stepwise breakdown of the development of PLS.
    CONCLUSIONS: The resulting 'How-To' Guide is a standalone, practical, ready-to-use tool to support multi-stakeholder co-creation of PLS.
    Keywords:  Patient engagement; Plain language summary; Scientific publication
    DOI:  https://doi.org/10.1186/s40900-022-00358-6
  5. Patient. 2022 Jun 02.
      A quote attributed to Mark Twain states, "What gets us into trouble is not what we don't know. It's what we know for sure that just ain't so." The growing focus on patient centricity has revealed a misalignment between what patients report as important to them about their disease and/or treatment, and the data collected in research and care. Decisions across healthcare are made using an evidence base most stakeholders acknowledge is inadequate. Patients might report that what is important to them are everyday life impacts, concepts that can be very different from the more typical clinical outcomes we often track. In this paper, we encourage expanding current thinking to all "impacts," not only health outcomes, but also the other equally (and sometimes more important) concerns patients report as important to them. We propose that a patient-centered core impact set be developed for each disease or condition of interest, and/or subpopulation of patients. A patient-centered core impact set begins with gathering from patients and caregivers an inventory of all impacts disease and treatments have on a patient's (and carers' and families') life. Then, through a formal prioritization process, a core set of impacts is derived, inclusive of but extending beyond relevant health outcomes. We offer several recommendations on how to move the goal of a patient-centered core impact set forward through collaboration, leadership, and establishment of a patient-centered core impact set development blueprint with supporting tools.
    DOI:  https://doi.org/10.1007/s40271-022-00583-x
  6. Health Commun. 2022 May 30. 1-11
      This article critically examines the four patterns of shared medical decision making (physician-dominated; physician-defined, patient-made; patient-defined, physician-made; and patient-dominated) suggested by Lippa et al. (2017). The aim of the study is to challenge these patterns with a new data set of conversations between physicians and cancer patients in a hospital ward. We recorded 13 physician-patient-conversations during the medical round in an Austrian hospital, which in total lasted about 1.5 h (language: German). We then categorized the medical decisions found in the data following Lippa et al.'s instructions and further analyzed them with a fine-grained linguistic approach. The study revealed no patient-dominated decisions and one decision, which could not be categorized with one of the patterns. Results from the linguistic approach call into question the generalizability, distinctiveness and validity of the patterns. Finally, the relationship between shared decision making and clinical distributed cognition is discussed.
    DOI:  https://doi.org/10.1080/10410236.2022.2065736
  7. J Patient Exp. 2022 ;9 23743735221103030
      Whiteboards are ubiquitous fixtures in hospital rooms that may represent a ready-made patient engagement tool; yet, their use has only been minimally explored. This study examined the relationship between a standardized whiteboard communication process and patient activation by using the Patient Activation Measure (PAM®). Participants (N = 172) that were optimally involved in whiteboard communication had significantly higher PAM® scores compared to those who were suboptimally involved. PAM® scores also correlated with self-reported role, with those endorsing active participation scoring higher than passive listeners. Accordingly, this study establishes a positive association between the structured use of whiteboards and patient activation.
    Keywords:  patient activation; patient education; patient engagement; whiteboard
    DOI:  https://doi.org/10.1177/23743735221103030
  8. JMIR Hum Factors. 2022 Jun 03. 9(2): e35478
       BACKGROUND: In patient care, demand is growing for digital health tools to enable remote services and enhance patient involvement. People with chronic conditions often have multiple health problems, and long-term follow-up is recommended to meet their needs and enable access to appropriate support. A digital tool for previsit preparation could enhance time efficiency and guide the conversation during the visit toward the patient's priorities.
    OBJECTIVE: This study aims to develop a digital previsit tool and explore potential end user's perceptions, using a participatory approach with stroke as a case example.
    METHODS: The digital tool was developed and prototyped according to service design principles, informed by qualitative participant data and feedback from an expert panel. All features were processed in workshops with a team that included a patient partner. The resulting tool presented questions about health problems and health information. Study participants were people with stroke recruited from an outpatient clinic and patient organizations in Sweden. Development and data collection were conducted in parallel. For conceptualization, the initial prototype was based on the Post-Stroke Checklist and research. Needs and relevance were explored in focus groups, and we used a web survey and individual interviews to explore perceived utility, ease of use, and acceptance. Data were thematically analyzed following the Framework Method.
    RESULTS: The development process included 22 participants (9 women) with a median age of 59 (range 42-83) years and a median of 51 (range 4-228) months since stroke. Participants were satisfied or very satisfied with using the tool and recommended its use in clinical practice. Three main themes were constructed based on focus group data (n=12) and interviews (n=10). First, valuable accessible information illuminated the need for information to confirm experiences, facilitate responses, and invite engagement in their care. Amendments to the information in turn reconfigured their expectations. Second, utility and complexity in answering confirmed that the questions were relevant and comprehensible. Some participants perceived the answer options as limiting and suggested additional space for free text. Third, capturing needs and value of the tool highlighted the tool's potential to identify health problems and the importance of encouraging further dialog. The resulting digital tool, Strokehälsa [Strokehealth] version 1.0, is now incorporated into a national health platform.
    CONCLUSIONS: The participatory approach to tool development yielded a previsit digital tool that the study group perceived as useful. The holistic development process used here, which integrated health information, validated questions, and digital functionality, offers an example that could be applicable in the context of other long-term conditions. Beyond its potential to identify care needs, the tool offers information that confirms experiences and supports answering the questions in the tool. The tool is freely shared for adaptation in different contexts.
    TRIAL REGISTRATION: researchweb 236341; https://www.researchweb.org/is/vgr/project/236341.
    Keywords:  Post-Stroke Checklist; Strokehälsa; chronic care; co-design; digital tool; eHealth; follow-up; health literacy; shared decision making; stroke
    DOI:  https://doi.org/10.2196/35478
  9. Front Surg. 2022 ;9 896351
      Patients and their surgeons face a complex and evolving set of choices in the process of shared decision making. The plan of care must be tailored to individual patient risk factors and values, though objective estimates of risk can be elusive, and these risk factors are often modifiable and can alter the plan of care. Machine learning can perform real-time predictions of outcomes, though these technologies are limited by usability and interpretability. Gamification, or the use of game elements in non-game contexts, may be able to incorporate machine learning technology to help patients optimize their pre-operative risks, reduce in-hospital complications, and hasten recovery. This article proposes a theoretical mobile application to help guide decision making and provide evidence-based, tangible goals for patients and surgeons with the goal of achieving the best possible operative outcome that aligns with patient values.
    Keywords:  decision support; gamification; machine learning and AI; serious game; shared decision making
    DOI:  https://doi.org/10.3389/fsurg.2022.896351
  10. Cancer Nurs. 2022 May 31.
       BACKGROUND: The considerable growth in the number of patients with breast cancer leads to substantial pressure on healthcare services; however, the main measures that will evaluate what is important to the key stakeholders in improving the quality of breast cancer care are not well defined.
    OBJECTIVE: This study aimed to synthesize providers' and patients' experiences and perspectives regarding barriers and quality breast cancer care in health services.
    METHODS: PubMed, Scopus, MEDLINE, Web of Knowledge, and the Cochrane Library databases were searched, and articles published in English up to August 2020 were screened. Two reviewers independently screened all articles. Data were obtained directly from different stakeholder groups including patients, health providers, and professionals.
    RESULTS: The search strategy identified 21 eligible articles that met inclusion criteria and reported perspectives of 847 health providers and 24 601 patients regarding healthcare quality. Health providers and patients with breast cancer noted information needs, psychosocial support, responsibility for care, and coordination of care as important quality improvement characteristics of the healthcare system.
    CONCLUSION: Shifting to high-quality breast cancer care would likely be a complicated process, and there is a need for the cancer care services to consider important characteristics of quality cancer care as a care priority, that is, to be responsive.
    IMPLICATION FOR PRACTICE: Breast cancer survivorship care programs and interventions may need to consider the barriers or common challenges to care noted in this review, especially regarding information sharing and the need for social support and care cooperation.
    DOI:  https://doi.org/10.1097/NCC.0000000000001119
  11. Int J Health Plann Manage. 2022 May 28.
      Patient engagement in healthcare planning and evaluation has been promoted as a way to improve healthcare's ability to meet patients' needs. However, populations experiencing oppression and discrimination, such as racism, colonialism, sexism, heterosexism, cisnormativity, ableism, classism, and poverty, are often underrepresented in patient engagement spaces. The context and structure of patient engagement processes may systematically exclude certain populations from participating in meaningful ways or from participating at all. By excluding certain populations from active, meaningful patient engagement, we risk planning and evaluating health services on the basis of the values, needs, and preferences of the dominant population. This, in turn, will further entrench health inequities and preclude the ability to surface ideas that challenge dominant conceptualisations of health and healthcare, thereby reinforcing the status quo rather than promoting healthcare transformation. Recognising that experiences of health, healthcare, and patient engagement processes are mediated through gender, race, ability, sexual orientation, and other dimensions of diversity, it is proposed that processes for engaging patients in healthcare planning and evaluation must by intersectional, attend to systemic and power relations, and truly put patients in the driver's seat of engagement processes. Health services planners and evaluators need to create more inclusive, accessible, and appropriate patient engagement experiences in order to focus on transforming healthcare towards a more socially just system.
    Keywords:  evaluation; healthcare planning; patient engagement; social justice
    DOI:  https://doi.org/10.1002/hpm.3509
  12. Community Ment Health J. 2022 Jun 01.
      Pathways through the mental health care system can be complex and laden with barriers that prevent individuals from finding the most appropriate care. Navigation has been proposed as a solution for improving access to and transition through complex health care systems. While several MHA navigation programs have emerged in the past decade, no study has explored the core themes of MHA navigation, which was the goal of the current review. A scoping review was conducted; the search yielded 11,525 unique results, of which 26 were entered into extraction and subsequent descriptive and thematic analysis. Barrier reduction, client-centered support, and integrated care emerged as the distinct themes underlying MHA services, and overall, navigation significantly improved outcomes for individuals experiencing MHA issues. These findings may support evidence-based implementation of navigation services and point to a need for increased exploration and reporting of MHA navigation outcomes in the literature.
    Keywords:  Addictions; Health care; Mental health; Navigation; Review; Systems
    DOI:  https://doi.org/10.1007/s10597-022-00982-2
  13. Front Public Health. 2022 ;10 842462
       Background: For many chronically ill patients self-management of their disease is difficult. This may be especially true for people with limited health literacy as they are faced with additional challenges in the day-to-day management of their disease. Research has shown that self-management support is most effective when tailored to the needs and preferences of patients. Therefore, this study explores the preferences regarding self-management outcomes of chronically ill patients with limited health literacy.
    Methods: A total of 35 patients with limited health literacy were invited to a concept-mapping procedure consisting of two card sorting tasks. Patients ranked 60 outcomes, which are often found in literature in relation to self-management, to the level that was important for themselves. Means were calculated for each outcome and domain, and differences within the group were analyzed.
    Results: For patients with limited health literacy, satisfaction with care is the most important outcome domain. This domain includes overall satisfaction, the communication with health care providers, the provision of information and trust. At an outcome level, outcomes related to symptom management and improving competences to self-management scored very high. No differences between patient groups for age and sex were found.
    Conclusion: Chronically ill patients with limited health literacy prefer a wide variety of outcomes for their self-management. Next to health related outcomes, patients mostly prefer to work on their competences for self-management. For health care professionals, acting on these patient preferences and building a solid relationship will enhance successful self-management.
    Keywords:  chronic disease; concept mapping; health literacy; patient preference; self-management
    DOI:  https://doi.org/10.3389/fpubh.2022.842462
  14. Worldviews Evid Based Nurs. 2022 May 30.
       BACKGROUND: Pressure injuries (PIs) are generally regarded as predictable and preventable. Therefore, providing appropriate care for PI prevention and its management is vital. Patient education is a significant component of the PI international guideline-recommended strategy in preventing PIs. Despite the availability of evidence supporting patient education, consensus regarding the effect of patient education on knowledge, patient participation, wound healing progress, and quality of life is still lacking.
    AIMS: The main aim was to systematically evaluate the available evidence regarding the effectiveness of structured patient education on their knowledge, participation, wound healing, and quality of life.
    METHODS: The search strategy retrieved studies published between 2009 and 2021 in English across PubMed, MEDLINE, CINAHL, ProQuest, and Cochrane Library. Adult participants aged 18 years and above were included. Randomized controlled trials, quasi-experimental, and interventional studies were all included in this review. Three independent reviewers assessed the methodological quality of the studies, prior to critical appraisal, using standardized tools, that is, the Joanna Briggs Institute checklist for randomized and non-randomized studies. A narrative synthesis was conducted.
    RESULTS: A total of eight studies (466 participants) were included in this review. Available evidence indicated improved patient knowledge, participation, and quality of life with structured patient education. However, there was insufficient high-quality evidence to conclude the effect on wound healing.
    LINKING EVIDENCE TO ACTION: Structured patient education for PI was deemed to help improve patients' knowledge, participation, and quality of life. More rigorous trials are needed for the effect on wound healing progress. Thus, future educational interventions should include wound care components that describe the patient's role in promoting wound healing. A well-structured patient education program protocol is crucial to ensure the educational intervention was measurable in its effectiveness and reproducibility.
    Keywords:  educational intervention; engagement; participation; patient education; patient-centered; patient-related outcome; pressure injury; quality of life; wound care; wound healing
    DOI:  https://doi.org/10.1111/wvn.12582
  15. BMC Med Inform Decis Mak. 2022 May 31. 22(1): 145
       BACKGROUND: It is well known that decision aids can promote patients' participation in decision-making, increase patients' decision preparation and reduce decision conflict. The goal of this study is to explore the effects of a "Shared Decision Making Assistant" smartphone application on the decision-making of informed patients with Primary Liver Cancer (PLC) in China.
    METHODS: In this quasi-experimental study , 180 PLC patients who knew their real diagnoses in the Eastern Hepatobiliary Surgery Hospital, Naval Medical University, Shanghai, China, from April to December 2020 were randomly assigned to a control group and an intervention group. Patients in the intervention group had an access to the "Shared Decision Making Assistant" application in decision-making, which included primary liver cancer treatment knowledge, decision aids path, continuing nursing care video clips, latest information browsing and interactive platforms. The study used decision conflict scores to evaluate the primary outcome, and the data of decision preparation, decision self-efficacy, decision satisfaction and regret, and knowledge of PLC treatment for secondary outcomes. Then, the data were entered into the SPSS 22.0 software and were analyzed by descriptive statistics, Chi-square, independent t-test, paired t-test, and Mann-Whitney tests.
    RESULTS: Informed PLC patients in the intervention group ("SDM Assistant" group) had significantly lower decision conflict scores than those in the control group. ("SDM Assistant" group: 16.89 ± 8.80 vs. control group: 26.75 ± 9.79, P < 0.05). Meanwhile, the decision preparation score (80.73 ± 8.16), decision self-efficacy score (87.75 ± 6.87), decision satisfaction score (25.68 ± 2.10) and knowledge of PLC treatment score (14.52 ± 1.91) of the intervention group were significantly higher than those of the control group patients (P < 0.05) at the end of the study. However, the scores of "regret of decision making" between the two groups had no statistical significance after 3 months (P > 0.05).
    CONCLUSIONS: Access to the "Shared Decision Making Assistant" enhanced the PLC patients' performance and improved their quality of decision making in the areas of decision conflict, decision preparation, decision self-efficacy, knowledge of PLC treatment and satisfaction. Therefore, we recommend promoting and updating the "Shared Decision Making Assistant" in clinical employment and future studies.
    Keywords:  Decision aids; Decision-making; Patient; Primary liver cancer; Smartphone application
    DOI:  https://doi.org/10.1186/s12911-022-01883-w
  16. Cogn Emot. 2022 Jun 02. 1-20
      When individuals cannot make up their mind, they sometimes use a random decision-making aid such as a coin to make a decision. This aid may also elicit affective reactions: A person flipping a coin may (dis)like the outcome, and thus decide according to this feeling. We refer to this process as catalysing decisions and to the aid as catalyst. We investigate whether using a catalyst may not only elicit affect but also result in more affect-based decision making. We used different online studies that examine affect-driven decisions by investigating scope insensitivity (indirect behavioural measure) and self-reported weight given to feelings versus reasons in hypothetical donation decisions. Study 1a showed that a catalyst (a lottery wheel) lead to more scope insensitive (i.e. affect-driven) donations. Study 1b included several changes and did not replicate these results. Study 2 (preregistered) examined scope insensitivity but did not replicate previous results; Study 3 (preregistered) looked at the weight given to feelings versus reason. Although catalyst (compared to control) participants descriptively reported relying more on feelings, this difference did not reach significance. In contrast to lay beliefs, results do not indicate support for the hypothesis that using a catalyst results in more affect-based hypothetical donation decisions.
    Keywords:  Social cognition; affect; decision-making; feelings; preferences
    DOI:  https://doi.org/10.1080/02699931.2022.2084041
  17. J Pediatr Nurs. 2022 May 30. pii: S0882-5963(22)00112-9. [Epub ahead of print]66 70-78
       BACKGROUND: Health care transition (HCT) has become increasingly important as adolescents and young adults (AYAs) with complex medical conditions now live well into adulthood but little attention has been given to parents of AYAs preparing for HCT.
    OBJECTIVE: This scoping review aimed to identify and synthesize information on parental facilitators and barriers to health care transition readiness.
    ELIGIBILITY CRITERIA: English-language, peer-reviewed original studies focused on the parents' experience of HCT were included. Studies were excluded if AYAs were not anticipated to be independent or if AYAs had only mental health disorders.
    CHARTING METHODS: Parent-reported facilitators and barriers were identified in each study and then categorized to identify common themes.
    RESULTS: Themes related to parental facilitators included evidence of coordination between pediatric and adult levels of care, healthcare provider guidance for HCT, and parental awareness and acceptance of natural seasons of life. Themes related to parental barriers included relationship loss, loss of parental role, lack of knowledge and/or skills, and concerns related to the health care system in general.
    CONCLUSION: Common facilitators and barriers were found across studies, regardless of medical diagnosis. Relationships and role change figure prominently in parents' perceptions of the HCT experience and their readiness for their AYA children to transition. These findings suggest potential areas for future research inquiry as well as potential nursing interventions designed to aid parents through HCT.
    Keywords:  Adolescents; Chronic disease; Parents; Transition
    DOI:  https://doi.org/10.1016/j.pedn.2022.04.018