bims-paceca Biomed News
on Patient-centred care
Issue of 2022–05–29
33 papers selected by
Rob Penfold, Queensland Health



  1. Z Evid Fortbild Qual Gesundhwes. 2022 May 23. pii: S1865-9217(22)00071-X. [Epub ahead of print]
      In Norway, shared decision-making (SDM) is on the top of the priorities announced by the health authorities. Accountability for implementing this priority has been delegated to the four health regions, and from there into particular departments, hospital trusts, working groups or SDM coordinators. Using abundant public funding, different approaches to producing and implementing patient decision aids have been developed. However, none of these is implemented by any Norwegian services on a regular basis, while the accessible decision aids on the national health platform are not quality approved and in very little use. An ongoing new project is aimed to resolve this dilemma. Health professional training has been developed as a meta-curriculum with multiple modules, adaptive to setting and user group, and designed as an open-source learning platform, based upon the experience of "SDM Ambassadors" delivering the training. Most of the modules are already implemented on a regular basis in the South-Eastern Health Region, and 5000 health care professionals have already graduated from the training modules. However, in the standard patient pathways, and in most of the national medical guidelines, the patient is still considered to be a passive receiver of directives or recommendations, rather than an active participant in their own health decisions. Considerable structural implementation has been done in the education guidelines of all health professions on all levels to embed SDM principles. Teaching in SDM skills, quality of information and evidence-based nursing has become standard in most of the programs at Norwegian universities. Nevertheless, we currently still have no reliable estimate on the degree to which patients are actually involved in their own health decision-making. Further efforts in the process of implementing the patient's choice in the health system should involve the municipal services, follow a research-based strategy, include monitoring and consider the quality level of the informational environment of health-related decisions.
    Keywords:  Decision aid; Entscheidungshilfe; Evidence-based medicine; Evidenzbasierte Medizin; Implementation; Implementierung; Informed choice; Informierte Entscheidung; Partizipative Entscheidungsfindung; Shared decision-making
    DOI:  https://doi.org/10.1016/j.zefq.2022.04.021
  2. Z Evid Fortbild Qual Gesundhwes. 2022 May 19. pii: S1865-9217(22)00082-4. [Epub ahead of print]
      Shared decision making (SDM) is defined as an approach in which clinicians and patients share the best available evidence when faced with the task of making decisions, and in which patients are supported to consider options to achieve informed preferences [1]. Over the past decade, SDM has been increasingly recognized as a component of value-based care in the US. There is greater acceptance overall that SDM is a key strategy for achieving patient-centered care, enhancing patient safety, and achieving the triple aim of better health, better care, and lower costs [2]. Essential elements of SDM include recognizing and acknowledging that a decision is required; knowing and understanding the best available evidence on risks and benefits; and incorporating the patient's values and preferences into the decision [3]. This paper provides an update of our previous review of SDM in the US published in 2017. We describe changes in healthcare policies to support SDM at the federal and state levels, the integration of SDM into clinical practice, and the role of implementation science to advance SDM. Finally, we discuss potential next steps to inform policies for SDM and facilitate uptake of SDM in clinical practice.
    Keywords:  Implementation science; Implementierungswissenschaft; Partizipative Entscheidungsfindung; Policy; Politik; Shared decision making; United States; Vereinigte Staaten von Amerika
    DOI:  https://doi.org/10.1016/j.zefq.2022.04.031
  3. BMC Med Inform Decis Mak. 2022 May 27. 22(1): 143
       BACKGROUND: Research shows that people with stable angina need decision support when considering elective treatments. Initial treatment is with medicines but patients may gain further benefit with invasive percutaneous coronary intervention (PCI). Choosing between these treatments can be challenging for patients because both confer similar benefits but have different risks. Patient decision aids (PtDAs) are evidence-based interventions that support shared decision-making (SDM) when making healthcare decisions. This study aimed to develop and user-test a digital patient decision aid (CONNECT) to facilitate SDM for people with stable angina considering invasive treatment with elective PCI.
    METHODS: A multi-phase study was conducted to develop and test CONNECT (COroNary aNgioplasty dECision Tool) using approaches recommended by the International Patient Decision Aid Standards Collaboration: (i) Steering Group assembled, (ii) review of clinical guidance, (iii) co-design workshops with patients and cardiology health professionals, (iv) first prototype developed and 'alpha' tested (semi-structured cognitive interviews and 12-item acceptability questionnaire) with patients, cardiologists and cardiac nurses, recruited from two hospitals in Northern England, and (v) final PtDA refined following iterative user-feedback. Quantitative data were analysed descriptively and qualitative data from the interviews analysed using deductive content analysis.
    RESULTS: CONNECT was developed and user-tested with 34 patients and 29 cardiology health professionals. Findings showed that CONNECT was generally acceptable, usable, comprehensible, and desirable. Participants suggested that CONNECT had the potential to improve care quality by personalising consultations and facilitating SDM and informed consent. Patient safety may be improved as CONNECT includes questions about symptom burden which can identify asymptomatic patients unlikely to benefit from PCI, as well as those who may need to be fast tracked because of worsening symptoms.
    CONCLUSIONS: CONNECT is the first digital PtDA for people with stable angina considering elective PCI, developed in the UK using recommended processes and fulfilling international quality criteria. CONNECT shows promise as an approach to facilitate SDM and should be evaluated in a clinical trial. Further work is required to standardise the provision of probabilistic risk information for people considering elective PCI and to understand how CONNECT can be accessible to underserved communities.
    Keywords:  Angina; Coronary angioplasty; Decision aid; Patient-centred care; Percutaneous coronary intervention; Shared decision-making
    DOI:  https://doi.org/10.1186/s12911-022-01882-x
  4. Value Health. 2022 May 22. pii: S1098-3015(22)00198-X. [Epub ahead of print]
       OBJECTIVES: Decision-aids (DAs) may facilitate shared decision-making for patients and caregivers, by providing evidence-based information to assist healthcare professionals, patients, and caregivers in making choices about aspects of care, and/or highlighting decision factors to discuss with the potential of altering the treatment decision. These decision factors may not be well integrated in DAs.
    METHODS: A systematic literature review was conducted in the field of multiple myeloma (MM) on peer-reviewed publications, extended with a gray literature search. Data on whether and how patient and caregiver experience elements, other than survival and physical quality of life, were mentioned as decision factors in the identified MM DAs were extracted and analyzed qualitatively.
    RESULTS: Seventy MM DAs were found and analyzed; 51% of DAs mentioned any patient non-routinely assessed experience decision factors and only 17% mentioned any caregiver-related information. One hundred and forty potential decision factors were extracted, deduplicated and categorized into the following categories: 1) financial, 2) mode of administration / transportation issues, 3) personal beliefs and values, 4) emotional and social quality of life, 5) other medical information, 6) availability of social support, 7) caregiver burden. None of the DAs presented a comprehensive framework on all seven categories of decision factors being consider when mapping patient and caregiver experience value elements in MM.
    CONCLUSIONS: Based on available DAs, we recommend a set of patient and caregiver experience decision factors that have the potential to affect treatment choices of patients with MM, which should be included in DAs, including MM clinical guidelines.
    Keywords:  decision aids; decision factors; myeloma; patient and caregiver perspective; shared decision making
    DOI:  https://doi.org/10.1016/j.jval.2022.04.003
  5. Aust J Prim Health. 2022 May 26.
      Approximately 60% of Australians have low or marginal health literacy, which is associated with poorer outcomes in patients with chronic disease. Patient-centred strategies (such as reduced medical jargon, use of pictograms, multimedia narratives) are effective in improving outcomes for many chronic diseases, with the impact being greatest in individuals with low health literacy. However, clinicians need a reliable and practical tool for assessing health literacy, the results of which help inform the choice of communication techniques best tailored to deliver information to patients. This article reviews the evidence of health literacy as an independent predictor of poor disease outcomes, describes feasible methods for assessing health literacy and presents communication strategies aimed at facilitating shared decision-making among those with low health literacy.
    DOI:  https://doi.org/10.1071/PY22015
  6. Worldviews Evid Based Nurs. 2022 May 24.
       BACKGROUND: Quality cancer care necessitates opportunities for patient participation, supposedly recognizing the individual's preferences and experiences for being involved in their health and healthcare issues. Previous research shows that surgical cancer patients wish to be more involved, requiring professionals to be sensitive of patients' needs.
    AIMS: To explore preference-based patient participation in surgical cancer care.
    METHODS: A cross-sectional study was conducted. The Patient Preferences for Patient Participation tool (4Ps) was used, which includes 12 attributes of preferences for and experiences of patient participation. Data were analyzed with descriptive and comparative statistical methods.
    RESULTS: The results are based on a total of 101 questionnaires. Having reciprocal communication and being listened to by healthcare staff were commonly deemed crucial for patient participation. While 60% of the patients suggested that taking part in planning was crucial for their participation, they had experienced this only to some extent. Learning to manage symptoms and phrasing personal goals were items most often representing insufficient conditions for preference-based patient participation.
    LINKING EVIDENCE TO ACTION: To support person-centered surgical care, further efforts to suffice preference-based participation are needed, including opportunities for patients to share their experiences and engage in the planning of healthcare activities.
    Keywords:  cancer care; involvement; patient participation; patient preferences; person-centered care; surgical care
    DOI:  https://doi.org/10.1111/wvn.12589
  7. Health Expect. 2022 May 27.
       BACKGROUND: Communicating about medications across transitions of care is important in older patients who frequently move between health care settings. While there is increasing interest in understanding patient communication across transitions of care, little is known about older patients' involvement in formal and informal modes of communication regarding managing medications.
    OBJECTIVE: The aim of this paper was to explore how older patients participated in managing their medications across transitions of care through formal and informal modes of communication.
    METHODS: The study was conducted across two metropolitan hospitals: an acute hospital and a geriatric rehabilitation hospital in metropolitan Melbourne, Australia. A focused ethnographic design was used involving semi-structured interviews (n = 50), observations (203 h) and individual interviews or focus groups (n = 25). Following thematic analysis, data were analysed using Fairclough's Critical Discourse Analysis.
    RESULTS: Data analysis revealed two major discursive practices, which comprised of an interplay between formal and informal communication and environmental influences on formal and informal communication. Self-created patient notes were used by older patients to initiate informal discussion with health professionals about medication decisions, which challenged traditional unequal power relations between health professionals and patients. Formal prompts on electronic medication administration records facilitated the continuous information discourse about patients' medications across transitions of care and encouraged health professionals to seek out older patients' preferences through informal bedside interactions. Environmental influences on communication comprised health professionals' physical movements across private and public spaces in the ward, their distance from older patients at the bedside and utilization of the computer systems during patient encounters.
    CONCLUSION: Older patients' self-created medication notes enabled them to take on a more active role in formal and informal medication communication across transitions of care. Older patients and family members did not have continuous access to information about medication changes during their hospital stay and systems often failed to address older patients' key concerns about their medications, which hindered their active involvement in formal and informal communication.
    PATIENT OR PUBLIC CONTRIBUTION: Older adults, family members and health professionals volunteered to be interviewed and observed.
    Keywords:  aged; communication; continuity of patient care; health personnel; medication therapy management; patient participation; patient transfer
    DOI:  https://doi.org/10.1111/hex.13524
  8. BMJ Open. 2022 May 24. 12(5): e057293
       OBJECTIVES: To identify what patient-related characteristics have been reported to be associated with the occurrence of shared decision-making (SDM) about treatment.
    DESIGN: Scoping review.
    ELIGIBILITY CRITERIA: Peer-reviewed articles in English or Dutch reporting on associations between patient-related characteristics and the occurrence of SDM for actual treatment decisions.
    INFORMATION SOURCES: COCHRANE Library, Embase, MEDLINE, PsycInfo, PubMed and Web of Science were systematically searched for articles published until 25 March 2019.
    RESULTS: The search yielded 5289 hits of which 53 were retained. Multiple categories of patient characteristics were identified: (1) sociodemographic characteristics (eg, gender), (2) general health and clinical characteristics (eg, symptom severity), (3) psychological characteristics and coping with illness (eg, self-efficacy) and (4) SDM style or preference. Many characteristics showed no association or unclear relationships with SDM occurrence. For example, for female gender positive, negative and, most frequently, non-significant associations were seen.
    CONCLUSIONS: A large variety of patient-related characteristics have been studied, but for many the association with SDM occurrence remains unclear. The results will caution often-made assumptions about associations and provide an important step to target effective interventions to foster SDM with all patients.
    Keywords:  MEDICAL EDUCATION & TRAINING; MEDICAL ETHICS; Quality in health care
    DOI:  https://doi.org/10.1136/bmjopen-2021-057293
  9. Health Care Manage Rev. 2022 May 26.
       BACKGROUND: Patient engagement (PE) is critical to improving patient experience and outcomes, as well as clinician work life and lowering health care costs, yet health care organizations (HCOs) have limited guidance about how to support PE. The engagement capacity framework considers the context of engagement and examines precursors to engagement, including patients' self-efficacy, resources, willingness, and capabilities.
    PURPOSE: The aim of this study was to explore clinician and patient perspectives related to mechanisms through with the HCOs can facilitate PE through the lens of the engagement capacity framework.
    METHODOLOGY/APPROACH: We administered an online open-ended survey to clinicians and patient advisors across the United States, including questions focused on the influences of, barriers to, and skills and tools required for PE. A common theme emerged focusing on the role of HCOs in facilitating engagement. Our analysis examined all responses tagged with the "health care system" code.
    RESULTS: Over 750 clinicians and patient advisors responded to our survey. Respondents identified offering advice and support for patients to manage their care (self-efficacy), providing tools to facilitate communication (resources), working to encourage connection with patients (willingness), and training for HCO employees in cultural competency and communication skills (capabilities) as important functions of HCOs related to engagement.
    CONCLUSION: HCOs play an important role in supporting a strong partnership between the patient and clinicians. Our study identifies important mechanisms through which HCOs can fulfill this role.
    PRACTICE IMPLICATIONS: HCO leadership and administration can help establish the culture of care provided. Policies and initiatives that provide appropriate communication tools and promote culturally competent care can increase engagement.
    DOI:  https://doi.org/10.1097/HMR.0000000000000346
  10. J Gen Intern Med. 2022 May 23.
       BACKGROUND: Patient-centered care reflecting patient preferences and needs is integral to high-quality care. Individualized care is important for psychosocially complex or high-risk patients with multiple chronic conditions (i.e., multimorbidity), given greater potential risks of interventions and reduced benefits. These patients are increasingly prevalent in primary care. Few studies have examined provision of patient-centered care from the clinician perspective, particularly from primary care physicians serving in integrated, patient-centered medical home settings within the US Veterans Health Administration.
    OBJECTIVE: We sought to clarify facilitators and barriers perceived by primary care physicians in the Veterans Health Administration to delivering patient-centered care for high-risk or complex patients with multimorbidity.
    DESIGN: We conducted semi-structured telephone interviews from April to July 2020 among physicians across 20 clinical sites. Findings were analyzed with deductive content analysis based on conceptual models of patient-centeredness and hierarchical factors affecting care delivery.
    PARTICIPANTS: Of 23 physicians interviewed, most were female (n = 14/23, 61%), serving in hospital-affiliated outpatient clinics (n = 14/23, 61%). Participants had a mean of 21 (SD = 11.3) years of experience.
    KEY RESULTS: Facilitators included the following: effective physician-patient communication to individualize care, prioritize among multiple needs, and elicit goals to improve patient engagement; access to care, enabled by interdisciplinary teams, and dictating personalized care planning; effortful but worthwhile care coordination and continuity; meeting complex needs through effective teamwork; and integrating medical and non-medical care aspects in recognition of patients' psychosocial contexts. Barriers included the following: intra- and interpersonal (e.g., perceived patient reluctance to engage in care); organizational (e.g., limited encounter time); and community or policy impediments (e.g., state decisional capacity laws) to patient-centered care.
    CONCLUSIONS: Physicians perceived individual physician-patient interactions were the greatest facilitators or barriers to patient-centered care. Efforts to increase primary care patient-centeredness for complex or high-risk patients with multimorbidity could focus on targeting physician-patient communication and reducing interpersonal conflict.
    Keywords:  clinical decision-making; health priorities; multimorbidity; patient-centered care; qualitative research
    DOI:  https://doi.org/10.1007/s11606-022-07533-1
  11. Value Health. 2022 May 24. pii: S1098-3015(22)00197-8. [Epub ahead of print]
       OBJECTIVES: Given the increasing availability of electronic health records, it has become increasingly feasible to adopt data-driven approaches to capture a deep understanding of the patient journeys. Nevertheless, simply using data-driven techniques to depict the patient journeys without an integrated modeling and analysis approach is proving to be of little benefit for improving patients' experiences. Indeed, a model of the journey patterns is necessary to support the improvement process.
    METHODS: We presented a 3-phase methodology that integrates a process mining-based understanding of patient journeys with a stochastic graphical modeling approach to derive and analyze the analytical expressions of some important performance indicators of an emergency department including mean and variance of patients' length of stay (LOS).
    RESULTS: Analytical expressions were derived and discussed for mean and variance of LOS times and discharge and admission probabilities. LOS differed significantly depending on whether a patient was admitted to the hospital or discharged. Moreover, multiparameter sensitivity equations are obtained to identify which activities contribute the most in reducing the LOS at given operating conditions so decision makers can prioritize their improvement initiatives.
    CONCLUSIONS: Data-driven based approaches for understanding the patient journeys coupled with appropriate modeling techniques yield a promising tool to support improving patients' experiences. The modeling techniques should be easy to implement and not only should be capable of deriving some key performance indicators of interest but also guide decision makers in their improvement initiatives.
    Keywords:  data-driven patient journey modeling; emergency department; length of stay; process mining; stochastic patient flow modeling
    DOI:  https://doi.org/10.1016/j.jval.2022.04.002
  12. Neurol Ther. 2022 May 24.
       INTRODUCTION: The mechanisms of action of disease-modifying therapies (DMTs) for multiple sclerosis (MS) are complex and involve an interplay of immune system components. People with MS (PwMS) may lack a clear understanding of the immunological pathways involved in MS and its treatment; effective communication between healthcare professionals (HCPs) and PwMS is needed to facilitate shared decision-making when discussing the disease and selecting DMTs and is particularly important in the coronavirus disease 2019 (COVID-19) era.
    METHODS: In this patient-authored two-part review, we performed a targeted literature search to assess the need for better communication between HCPs and PwMS regarding treatment selection, and also conducted a qualitative survey of four patient and care-partner authors to obtain insights regarding their understanding of and preferences for the treatment and management of MS.
    RESULTS: Following a search of the Embase and MEDLINE databases using Ovid in June 2020, an analysis of 40 journal articles and conference abstracts relating to patient empowerment and decision-making in DMT selection for MS showed a preference for safety and efficacy of treatments, followed by autonomy and convenience of administration. A need for better communication between HCPs and PwMS during treatment selection to improve patient satisfaction was also identified. The open survey responses from the patient authors revealed a need for greater involvement in decision-making processes and desire for improved communication and information tools.
    CONCLUSIONS: This targeted literature search and phenomenological review confirms PwMS preferences for empowered decision-making in disease management and treatment selection, to optimize independence, safety, and efficacy. It also identifies an unmet need for improved communication and information tools that convey MS information in a relatable manner. Furthermore, this review seeks to address this unmet need by providing plain language figures and descriptions of MS immune mechanisms that can be used to facilitate discussions between HCPs and PwMS.
    Keywords:  COVID-19; Disease-modifying therapies; Immunology; Mechanism of action; Multiple sclerosis; Patient engagement; Shared decision-making
    DOI:  https://doi.org/10.1007/s40120-022-00349-5
  13. Front Public Health. 2022 ;10 743348
       Background: Citizen science approaches, which involve members of the public as active collaborators in scientific research, are increasingly being recognized for their potential benefits in chronic disease prevention. However, understanding the potential applicability, feasibility and impacts of these approaches is necessary if they are to be more widely used. This study aimed to synthesize research that has applied and evaluated citizen science approaches in chronic disease prevention and identify key questions, gaps, and opportunities to inform future work in this field.
    Methods: We searched six databases (Scopus, Medline, Embase, PsycInfo, PubMed, and CINAHL) in January 2022 to identify articles on the use of citizen science in prevention. We extracted and synthesized data on key characteristics of citizen science projects, including topics, aims and level of involvement of citizen scientists, as well as methods and findings of evaluations of these projects.
    Results: Eighty-one articles reported on citizen science across a variety of health issues, predominantly physical activity and/or nutrition. Projects primarily aimed to identify problems from the perspective of community members; generate and prioritize solutions; develop, test or evaluate interventions; or build community capacity. Most projects were small-scale, and few were co-produced with policy or practice stakeholders. While around half of projects included an evaluation component, overall, there was a lack of robust, in-depth evaluations of the processes and impacts of citizen science projects.
    Conclusions: Citizen science approaches are increasingly being used in chronic disease prevention to identify and prioritize community-focused solutions, mobilize support and advocacy, and empower communities to take action to support their health and wellbeing. However, to realize the potential of this approach more attention needs to be paid to demonstrating the feasibility of using citizen science approaches at scale, and to rigorous evaluation of impacts from using these approaches for the diverse stakeholders involved.
    Keywords:  chronic disease prevention; citizen science (CS); community engagement (CE); health policy; health promotion; participatory research (PR); public health
    DOI:  https://doi.org/10.3389/fpubh.2022.743348
  14. BMC Endocr Disord. 2022 May 25. 22(1): 138
       BACKGROUND: Individually designed interventions delivered through mobile health applications (mHealth apps) may be able to effectively support diabetes self-care. Our aim was to review and synthesize available evidence in the literature regarding perception of adults with type 1 diabetes on the features of mHealth apps that help promote diabetes self-care, as well as facilitators and barriers to their use. An additional aim was to review literature on changes in patient reported outcome measures (PROMs) in the same population while using mHealth apps for diabetes self-care.
    METHODS: Quantitative and qualitative studies focusing on adults aged 18 years and over with type 1 diabetes in any context were included. A systematic literature search using selected databases was conducted. Data was synthesised using narrative synthesis.
    RESULTS: We found that features of mHealth apps designed to help promote and maintain diabetes self-care could be categorized into self-care data monitoring, app display, feedback & reminders, data entry, data sharing, and additional features. Factors affecting the use of mHealth apps reported in the literature were personal factors, app design or usability factors, privacy and safety factors, or socioeconomic factors. Quality of life and diabetes distress were the most commonly reported PROMs in the included studies.
    CONCLUSION: We are unable to reach a conclusive result due to the heterogeneity of the included studies as well as the limited number of studies reporting on these areas among adults with type 1 diabetes. We therefore recommend further large-scale studies looking into these areas that can ultimately improve mHealth app use in type 1 diabetes self-care.
    SYSTEMATIC REVIEW REGISTRATION: Prospero CRD42020157620 .
    Keywords:  Diabetes mellitus; Mobile applications; Mobile health; Patient reported outcome measures; Self care; Self-management; mHealth
    DOI:  https://doi.org/10.1186/s12902-022-01039-x
  15. Front Psychol. 2022 ;13 886077
      As an increasingly important application of mobile social media usage, online healthcare platforms provide a new avenue for patients to obtain and exchange information, referring not only to online doctor's advice but also to the patients' comments on a doctor. Extant literature has studied the patients' comments facilitated with the direct numeric information gathered in the web pages including the frequencies of "thanks letter," "flowers," and "recommendation scores." Adopting the text analysis method, we analyzed patients' comments on the healthcare platform, focusing on the comments from two aspects, namely, comment contents and content sentiment. Based on the analysis of the data collected from one of the most popular healthcare apps named "Haodaifu" in China, the results show that the vast majority of the comments are positive, which basically follows the L-shaped distribution. Meanwhile, comment sentiment covering sentiment tendency and proportion of positive comments demonstrates significant effects on recent 2-week consultation by a doctor. One of the comment contents "patience explanation" has significant effects both on the total consultation and recent 2-week consultation by a doctor. The research findings indicate that the online preferences for and evaluations on doctors provide strong support and guidance for improving doctor-patient relationships and offer implications for medical practices and healthcare platforms improvement.
    Keywords:  comment content; comment sentiment; online comments; online health platform; patients’ choices; text analysis
    DOI:  https://doi.org/10.3389/fpsyg.2022.886077
  16. Stud Health Technol Inform. 2022 May 25. 294 535-539
      Personal Health Records (PHRs) are poised to improve patient safety, however the mechanism(s) in which they improve safety is not clear. To this end, we conducted a scoping review with the following objectives: 1) explore the extent of the evidence that PHRs improve patient safety, 2) determine where PHR research has been done per International Medical Informatics Association (IMIA) Represented Region [1], 3) to identify the PHR naming convention(s) used per IMIA Region [1]. The findings revealed that there is limited evidence that PHRs improve patient safety. The results also revealed heterogeneity in PHR nomenclature and how they were used in healthcare settings. However, the overarching theme of the study, was that future research is needed to ensure that PHRs are designed and used in a patient safety context with human factors and usability considerations.
    Keywords:  Personal health record; health informatics; patient portal; patient safety
    DOI:  https://doi.org/10.3233/SHTI220516
  17. ESMO Open. 2022 May 18. pii: S2059-7029(22)00116-8. [Epub ahead of print]7(3): 100496
       BACKGROUND: Weighing risks and benefits is currently the primary criterion for decisions regarding systemic anticancer treatment (SACT) in far advanced cancer patients, also in the modern immunotherapy- and molecular-targeted driven oncology. Decision aids rarely include substantially key concepts of early integrated palliative care (PC) and communication science. We compiled decisional factors (DFs) important for guiding the use of SACT with palliative intent (SACT-PI) and explored these DFs regarding their applicability in routine clinical care.
    PATIENTS AND METHODS: Clinician (participants: n = 28) and patient (n = 15) focus groups were conducted in an integrated oncology and PC setting. Thematic analysis was used to identify DFs. A Delphi survey of clinicians ranked the importance of DFs in routine decision-making. DFs were aligned with elements of the typical decision-making process, resulting in an eight-step guide for making SACT-PI decisions in clinical practice.
    RESULTS: Eight focus groups revealed 55 DFs relating to established topics like providing information and risk-benefit analysis, as well as to PC topics like patients' attitudes, beliefs, and hopes; patient-physician interaction; and physician attitudes. Agreement on the relative importance was reached for 34 (62%) of 55 DFs, assigned to five elements: patient/family, clinicians/system, patient-clinician-interaction, information/patient education, risk-benefit weighting/actual decision. These themes are embedded in a potential clinically useful SACT-PI Decision Framework, which includes eight steps: assess, educate, verify, reflect, discuss, weigh, pause, and decide.
    CONCLUSIONS: The SACT-PI Decision Framework integrates subjective patient factors, interpersonal factors, and PC issues into decision-making. Our findings complement existing decision aids and prompt lists by framing DFs in the context of SACT-PI and enforce the decision 'process', not the decision act. Further research is needed to explore the relative importance of DFs in specific patient situations and test structured decision-making processes, such as our SACT-PI Decision Framework, against standard care.
    Keywords:  communication; decision-making; interprofessional; palliative oncology; physician attitudes
    DOI:  https://doi.org/10.1016/j.esmoop.2022.100496
  18. BMC Health Serv Res. 2022 May 23. 22(1): 693
       BACKGROUND: Research on patients' perceptions of cancer care often documents sub-optimal experiences. Cancer care quality issues include restricted service access, lack of care coordination, gaps in follow-up and "generic" rather than person-centered care. Recent reports underscore that proactively and periodically seeking user feedback is crucial for timely care quality improvement. The present study aimed to analyze and thematically organize a large amount of feedback from patients who had been treated for cancer within the last 6 months.
    METHODS: Randomly selected participants (N = 3,278) from 3 University-affiliated cancer centres in Montreal, Quebec, Canada completed the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) and an open-ended question on their perceptions of the care they received. 692 participants responded to the latter. Guided by the Cancer Experience Measurement Framework (CEMF), their feedback was analyzed using a qualitative thematic approach.
    RESULTS: Cancer care perceptions included sub-themes of care access and coordination, continuity/transition, and perceived appropriateness/personalisation of care. The most salient theme was captured by care access and coordination with 284 comments (44%) directly addressing these issues. The ways in which health care services were structured including setting, schedule, and location were often raised as cause for concerns. Issues surrounding cancer information/education, emotional support, and physical comfort were frequently reported as unmet needs. In addition, limited access to cancer services led patients to seek alternatives such as going to emergency departments and/or private care.
    CONCLUSIONS: These findings are timely as they show that most patients are well aware of quality issues in cancer care and are willing to report candidly on these. Patient feedback also underscore the importance for cancer care institutions to periodically gather patient-reported data so that systems can re-calibrate their service offerings according to these data. Ultimately, patient reports will translate into enhanced quality, personalization, and safer cancer care provision.
    Keywords:  Cancer care; Content analysis; Patient experience measurement framework; Patient experiences; Patient satisfaction; Person-centered care
    DOI:  https://doi.org/10.1186/s12913-022-07946-y
  19. Value Health. 2022 May 21. pii: S1098-3015(22)01926-X. [Epub ahead of print]
       OBJECTIVES: This study aimed to develop a framework facilitating (1) the maturity assessment of healthcare systems regarding patient-reported outcome measure (PROM) implementation and (2) the comparison of different healthcare systems' PROM implementation levels to guide discussions and derive lessons for regional, state-level, and national PROM initiatives.
    METHODS: Guided by the grounded theory methodology, a PROM healthcare system implementation framework was developed following multiple steps. Based on interviews with 28 experts from 12 countries and a literature review, a framework was drafted and refined through 29 additional validation interviews.
    RESULTS: The resulting framework comprises 5 implementation stages along 7 dimensions. Implementation stages range from "first experimentation" to "system-wide adoption and a vibrant ecosystem." The dimensions are grouped into patient-reported outcome (PRO) measurement and PRO utilization, the former with the dimensions "scope and condition coverage," "metric and process standardization," and "tools and information technology-based solutions" and the latter with "patient empowerment and clinical decision support," "reporting and quality improvement," and "rewarding and contracting." The "culture and stakeholder involvement" dimension connects both groups. Although a concerted implementation approach across dimensions can be observed in advanced countries, others show a more uneven adoption.
    CONCLUSIONS: The framework and its preliminary application to different healthcare systems demonstrate (1) the importance of coherent progress across complementing dimensions and (2) the relevance of PROM integration across clinical specialties and care sectors to strengthen patient-centered care. Overall, the framework can facilitate dialogues between stakeholders to analyze the current PROM implementation status and strategies to advance it.
    Keywords:  comparative health policy analysis; health policy framework; patient-reported outcome measures; patient-reported outcome measures implementation; value-based healthcare
    DOI:  https://doi.org/10.1016/j.jval.2022.04.1724
  20. J Cancer Surviv. 2022 May 23.
       PURPOSE: Patient-reported outcome measurements (PROMs) are increasingly used for cancer patients receiving active treatment, but little is known about the implementation and usefulness of PROMs in cancer survivorship care. This systematic review evaluates how cancer survivors and healthcare providers (HCPs) perceive PROM implementation in survivorship care, and how PROM implementation impacts cancer survivors' health outcomes.
    METHODS: We systematically searched PubMed/MEDLINE, Embase, CINAHL, Web of Science, and Cochrane Database of Systematic Reviews from database inception to February 2022 to identify randomized and nonrandomized studies of PROM implementation in cancer survivors.
    RESULTS: Based on prespecified eligibility criteria, we included 29 studies that reported on 26 unique PROMs. The studies were heterogeneous in study design, PROM instrument, patient demographics, and outcomes. Several studies found that cancer survivors and HCPs had favorable impressions of the utility of PROMs, and a few studies demonstrated that PROM implementation led to improvements in patient quality of life (QoL), with small to moderate effect sizes.
    CONCLUSIONS: We found implementation of PROMs in cancer survivorship care improved health outcomes for select patient populations. Future research is needed to assess the real-world utility of PROM integration into clinical workflows and the impact of PROMs on measurable health outcomes.
    IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors accepted PROMs. When successfully implemented, PROMs can improve health outcomes after completion of active treatment. We identify multiple avenues to strengthen PROM implementation to support cancer survivors.
    Keywords:  Cancer survivors; Implementation; Patient-reported outcomes; Quality of life
    DOI:  https://doi.org/10.1007/s11764-022-01216-w
  21. J Palliat Care. 2022 May 22. 8258597221098124
       OBJECTIVES: This study mapped research evidence spanning the last 10 years to identify the effect of being a surrogate decision maker for an incapacitated adult. Methods: A scoping review strategy was employed to allow for a focus on the breadth of the effect of surrogate decision making and to identify gaps in the existing research literature. Results: Surrogate decision making created emotional distress and burden for the majority of the SDMs. We found the negative effects on SDMs were linked to variety of stressors: fear of not knowing what the patient would want or being unable to fulfill the patient's actual or perceived wishes, feeling unprepared to assume the role of a SDM, and watching a loved one's health deteriorate over time. Discussion: Additional research is needed to elucidate the emotional burden of culturally diverse SDMs to determine their differences when compared to various groups.
    Keywords:  burden and decision making; surrogate; treatment
    DOI:  https://doi.org/10.1177/08258597221098124
  22. Int J Older People Nurs. 2022 May 27. e12481
       BACKGROUND: As persons, 60 years of age and older live longer, they are more likely to develop one or more chronic conditions. Rising numbers of older persons with multiple chronic conditions (MCCs) will increase the need for home healthcare services and hospital services and unplanned readmissions will increase globally.
    AIM: The aim of this integrative review was to explore the experiences of older persons with MCCs' unplanned readmission from home to hospital within 30 days of discharge using an integrative review.
    METHOD: Whittemore and Knafl's method was followed to address the research aim. Four databases (Ovid MEDLINE, Scopus, CINAHL and Embase) were searched between 2005 and 2020, suitability for inclusion was assessed, and data were extracted and analysed using content analysis.
    RESULTS: Thirteen articles (10 qualitative, one quantitative, and two mixed methods) were included in this review. Three themes emerged from the data that reflected older persons with MCCs' unplanned readmission experiences. These themes included (a) feelings of security, support and relief; (b) undesirable challenges at home (struggling to manage care and balancing support needs); and (c) unpleasant feelings and emotions (feelings of fear and mistrust, feelings of disappointment and loss, feelings of anxiousness and pressure).
    CONCLUSION: Research about unplanned readmission to the hospital does not provide sufficient detail or understanding about older persons with MCCs' experiences or their psychosocial experiences. Addressing research gaps related to the psychosocial processes and factors associated with unplanned readmission is needed to expand the current understanding of the process and concept of unplanned readmission.
    Keywords:  experiences; multiple chronic conditions; nursing; older persons; unplanned readmission
    DOI:  https://doi.org/10.1111/opn.12481
  23. Geriatr Nurs. 2022 May 20. pii: S0197-4572(22)00104-5. [Epub ahead of print]46 52-60
      Older adults with cognitive impairment often face difficulties with comprehension and communication, which can impact other cognitive processes such as decision-making. This scoping review investigates how visual methods can support older adults with cognitive impairment. The review involved querying four databases. From these databases, eleven articles fit inclusion criteria. This paper examines the purposes, use contexts, types, and effectiveness of the visual methods described in each study. The two major use contexts were elicitation of thoughts, feelings, and preferences in everyday life and health/healthcare related uses. Studies that used visual methods for eliciting preferences generally employed static visualizations. Health-related contexts employed more complex and interactive visualizations. Three studies used visual tools to support older adults in understanding; six, communication; and three, decision-making. None addressed all three outcomes of interest. This study provides recommendations and future directions for visual communication research with older adults with cognitive impairment.
    Keywords:  Cognitive impairment; Communication; Decision making; Understanding; Visual communication methods; Visualization
    DOI:  https://doi.org/10.1016/j.gerinurse.2022.04.027
  24. Ann Fam Med. 2022 May-Jun;20(3):20(3): 266-272
       PURPOSE: Access to health care is a long-standing concern for rural patients; however, administrative measures fail to capture the subjective patient experience of accessing health care. The purpose of this review was to synthesize the qualitative literature on patient and caregiver experiences of accessing health care services for chronic disease management among US residents of rural areas.
    METHODS: We searched Embase, MEDLINE, PsycInfo, CINAHL, and Scopus to identify qualitative studies published during 2010-2019. A thematic synthesis approach was used to analyze findings from included studies.
    RESULTS: A total of 62 studies involving 1,354 unique participants were included. The largest share of studies (24.2%) was focused on the experience of patients with cancer, followed by behavioral health (16.1%), HIV and AIDS (14.5%), and diabetes (12.9%). We identified 4 primary analytic themes of barriers and facilitators associated with the experience of accessing health care services for chronic disease management in rural areas: (1) navigating the rural environment, (2) navigating the health care system, (3) financing chronic disease management, and (4) rural life (ie, common elements of a distinct "rural" way of thinking and behaving).
    CONCLUSIONS: In this comprehensive review, we found that important cultural, structural, and individual factors influenced the rural patient's experience of health care access and use, including barriers and facilitators posed by geographic and built environments, and distinct rural mores. Our findings can inform policies and programs that both facilitate structural aspects of access and include culturally appropriate interventions.VISUAL ABSTRACT.
    Keywords:  barriers; chronic disease management; facilitators; health care access; public health; qualitative research; rural health; systematic review; vulnerable populations
    DOI:  https://doi.org/10.1370/afm.2798
  25. J Pharm Pract. 2022 May 21. 8971900221104707
       PURPOSE: To provide a review of pharmacists' impact during transitions of care (TOC) visits utilizing telehealth.
    METHODS: An electronic literature review was conducted on studies that addressed pharmacists' impact on telehealth during TOC. Articles included in the review were randomized or observational studies, cohort studies, case series or case reports, literature reviews, or pilot studies conducted on adults. Articles investigating children were excluded from the review.
    RESULTS: Of the articles identified, 14 studies met the eligibility criteria and were selected for the literature review. All of the studies were published in English between 2013 and 2021. Most were conducted in the United States of America (n = 12) with 1 conducted in Ireland (n = 1) and 1 in Australia (n = 1). The majority of telehealth monitoring was conducted via phone (n = 8), video conferencing (n = 3), or both (n = 2) in patients' homes by pharmacists alone (n = 8) while the remaining studies involved telemonitoring by a combination of pharmacy fellows, residents, and/or students. These findings showed that pharmacist intervention in patient care showed improved patient outcomes and goal markers for a variety of health conditions as well as lower rates of 30 day, 60 day, and 90 day hospital readmissions.
    CONCLUSION: Pharmacist involvement in telehealth monitoring had a positive impact on TOC interventions and overall patient outcomes including decreased hospital readmissions and increased patient medication adherence.
    Keywords:  and virtual; cardiovascular; hospital discharge; pharmacists; pharmacy; readmission; telehealth; telemonitoring; transitions of care
    DOI:  https://doi.org/10.1177/08971900221104707
  26. Int J Behav Med. 2022 May 26.
       BACKGROUND: Public health officials have worked to address the growing threat of antibiotic resistance. To slow the emergence of antimicrobial-resistant bacteria, it is important to improve patients' understanding of antibiotics and adjust their expectations of them. This study explores strategic antibiotic resistance communication between patients and health care providers in an online review platform.
    METHODS: Based on two experimental studies, we demonstrate the effectiveness of the provider's commitment messaging when dealing with patients' complaints about not receiving requested antibiotics during their visit.
    RESULTS: The findings from study 1 show that communicating the commitment to antibiotic stewardship makes participants have more favorable feelings toward the provider. Commitment messaging also makes readers perceive the provider as more credible, and they are more willing to visit the clinic in the future. Study 2 findings demonstrate a robustness of commitment messaging in increasing readers' willingness to visit the clinic, while the provider's response exhibits the limited impact of correcting patients' common misunderstandings of antibiotics and adjusting their expectations of antibiotics.
    CONCLUSIONS: Our findings illustrate some clear benefits of engaging with negative online patient reviews to minimize potential reputational damage and reestablish the credibility of care providers.
    Keywords:  Antibiotics resistance; Commitment messaging strategy; Online patient reviews; Patient-provider relationship
    DOI:  https://doi.org/10.1007/s12529-022-10102-9
  27. Int J Environ Res Public Health. 2022 May 18. pii: 6128. [Epub ahead of print]19(10):
      Therapeutic patient education (TPE) aims to empower the patients and their caregivers to effectively care for and manage their conditions. Such educational programs have been shown to improve health behaviors, disease outcomes, and quality of life among different patient populations. The field of TPE has evolved extensively over decades, owing to interdisciplinary research. No study so far has been done to map this field, to identify the stakeholders and gaps requiring future research. By leveraging the theory of co-citation, CiteSpace was used to visualize the bibliographic data pertaining to TPE research. A total of 54,533 articles published in English language were analyzed to identify influential funders, regions, and institutes contributing to this field. Besides these, significant theoretical and empirical contributions that shaped this field were mapped. Our analysis revealed several important insights. Most of the important theories that helped shape TPE were inspired from the social sciences. Five important research themes were identified: disorders, study designs utilized in TPE research, the scope of the TPE literature and outcomes, and populations. The research focused on improving perceptions, behaviors, and attitudes toward health promotion, reducing stigma, self-management and medication adherence. Most of the research was developed in the context of high-income countries. Future research should involve patients and use digital technology. Meta-analytical studies need to be done to identify the effectiveness and moderators of TPE interventions across different disorders. Further research should involve low and middle-income countries (LMIC) to ensure knowledge and technology transfer.
    Keywords:  health literacy; patient education; scientometric analysis
    DOI:  https://doi.org/10.3390/ijerph19106128
  28. Int Wound J. 2022 May 24.
      The objective of this study was to assess the viability and acceptability of an innovative Virtual Wound Care Command Centre where patients in the community, and their treating clinicians, have access to an expert wound specialist service that comprises a digitally enabled application for wound analysis, decision-making, remote consultation, and monitoring. Fifty-one patients with chronic wounds from 9 centres, encompassing hospital services, outpatient clinics, and community nurses in one metropolitan and rural state in Australia, were enrolled and a total of 61 wounds were analysed over 7 months. Patients received, on average, an occasion of service every 4.4 days, with direct queries responded to in a median time of 1.5 hours. During the study period, 26 (42.6%) wounds were healed, with a median time to healing of 66 (95% CI: 56-88) days. All patients reported high satisfaction with their wound care, 86.4% of patients recommended the Virtual Wound Care Command Centre with 84.1% of patients reporting the digital wound application as easy to use. Potential mean travel savings of $99.65 for rural patients per visit were recognised. The data revealed that the Virtual Wound Care Command Centre was a viable and acceptable patient-centred expert wound consultation service for chronic wound patients in the community.
    Keywords:  chronic wounds; digital wound application; telehealth; virtual care; wound care
    DOI:  https://doi.org/10.1111/iwj.13782
  29. Inf Serv Use. 2021 ;41(3-4): 203-211
      Under the leadership of NLM Director Donald A.B. Lindberg M.D., the National Library of Medicine (NLM) continued to promote its services to the nation's health care professionals and scientists. With support of the U.S. Congress, it initiated new communications and outreach programs and services directed at the general public that revolutionized their access to information as well. Because effective health communication must be tailored for the audience and the situation, Lindberg supported the development of online health information tools designed to help consumers find free, comprehensive, timely, and trustworthy sources of health information that, ultimately, can improve patient outcomes. New and popular consumer-friendly websites were championed by Lindberg, including MedlinePlus, and ClincialTrials.gov, and he formed unique partnerships with national physician organizations to educate their patients about reliable sources of health information from the NLM. A new era of timely and trusted online health information for the general public began in 2006 under Lindberg's tenure culminating in the development, publication and distribution of NIH's first consumer magazine, NIH MedlinePlus, featuring the research and findings of the NIH. In his effort to improve patient outcomes, Dr. Lindberg revolutionized the Library's outreach capabilities and successfully expanded its mission to serve not only health professionals and scientists, but also consumers nationwide.
    Keywords:  Donald A.B. Lindberg M.D.; U.S. National Library of Medicine; consumer health; outreach
    DOI:  https://doi.org/10.3233/ISU-210122
  30. Stud Health Technol Inform. 2022 May 25. 294 703-704
      Diabetes Prevention Programs (DPPs) can prevent or delay type 2 diabetes (T2D). However, the participation rates in DPPs have been limited. Many individuals at risk of developing diabetes have difficulties making healthy choices because of the cognitive effort required to understand the risks, the role of biomarkers, the consequences of inaction and the actions required to delay or avoid development of T2D. We report on the design and development of a prototype digital tool that decreases cognitive effort for people at risk of developing T2D using the effort-optimized intervention framework.
    Keywords:  Effort-Optimized Intervention Framework; Shared Decision-Making
    DOI:  https://doi.org/10.3233/SHTI220561
  31. J Patient Exp. 2022 ;9 23743735221102455
      In this paper, the authors review the verbatim comments from patients' post-emergency department discharge survey results and highlight the impact that doctors and nurses have on the patient's experience. This paper also explores the benefits of delivering a positive experience on patients, clinicians, and healthcare systems. Many interventions that have worked are simple to implement and do not tend to require significant capital investment while having the potential of improving emergency department encounters for all those involved. There are always limitations, selection biases, and issues with generalizability in reviewing retrospective and subjective survey response data.
    Keywords:  Press Ganey; emergency department scripting; emergency medicine; patient experience
    DOI:  https://doi.org/10.1177/23743735221102455
  32. JMIR Aging. 2022 May 23.
       BACKGROUND: Informal caregivers, hereafter referred to as caregivers, provide crucial support to older adults so they can remain safely in their homes as they age. Responsibility to take on caregiving roles can be influenced by individual factors, such as personal choice, or societal factors such as social determinants of health, including household income, employment status, or culture-specific gender roles. Over time, caregivers' own health can be negatively impacted by their caregiving role. While programs exist to support caregivers, availability and appropriateness of these services do not match caregivers' expressed needs. Research suggests that supportive interventions offered via mobile health technologies have the potential to increase caregivers' access to supportive services. However, a knowledge gap exists regarding the extent to which social determinants of health are considered in the design, implementation, and evaluation of mobile health (mHealth) interventions intended to support caregivers of older adults.
    OBJECTIVE: To conduct a systematic review to: (1) determine how health equity is considered in the design, implementation, and evaluation of mHealth interventions for caregivers of older adults using Cochrane-Equity's PROGRESS-Plus framework; and (2) synthesize evidence of the impacts of the identified caregiver-focused mHealth interventions.
    METHODS: A systematic review was conducted in five databases and articles published between January 2010 and June 2021 were included if they evaluated or explored the impacts of mHealth interventions on the health and wellbeing of informal caregivers of older adults. mHealth interventions were defined as supportive services, such as education, that caregivers of older adults accessed via mobile or wireless devices.
    RESULTS: A total of 28 articles met the inclusion criteria and were included in the systematic review. The interventions evaluated by the included studies sought to help caregivers make connections with services, facilitate the caregiving process, and promote the caregivers' health and wellbeing. The PROGRESS-Plus framework factors were mainly considered in the results, discussion, and limitations sections of included studies. Some PROGRESS-Plus factors such as sexual orientation, religion, and occupation, received little to no consideration across any phase of intervention design, implementation, or evaluation. Overall, findings of this review suggest that mHealth interventions were positively received by the studies' respective participants. Such interventions may have the potential to reduce caregiver burden and positively impact caregivers' physical and mental health while supporting them in their caregiving role. Study findings highlight the importance of making supports available to help facilitate caregivers' use of mHealth interventions, particularly early in the caregiving role, as well as the use of appropriate language and text.
    CONCLUSIONS: Successful uptake and spread of mHealth interventions to support caregivers of older adults will depend on creating opportunities for inclusive involvement of a broad range of stakeholders at all stages of design, implementation, and evaluation.
    CLINICALTRIAL: PROSPERO CRD42021239584; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=239584.
    DOI:  https://doi.org/10.2196/33085