bims-paceca Biomed News
on Patient-centred care
Issue of 2022–08–07
twelve papers selected by
Rob Penfold, Queensland Health
  1. Developing an Educational and Decision Support Tool for Stage I Lung Cancer using Decision Science.
  2. More than a fleeting conversation: managing medication communication across transitions of care.
  3. Health Literacy and Radiation Therapy: a Current State Assessment of Patient Education Materials.
  4. Patient judgments about hypertension control: the role of patient numeracy and graph literacy.
  5. Speech recognition can help evaluate shared decision making and predict medication adherence in primary care setting.
  6. Public and patient involvement in health policy decision-making on the health system level - A scoping review.
  7. Causes, impacts and possible mitigation of non-attendance of appointments within the National Health Service: a literature review.
  8. Patient involvement in priority-setting for medical research: A mini review of initiatives in the rare disease field.
  9. Digital Patient Experience: Umbrella Systematic Review.
  10. End-of-life dreams and visions: A systematic integrative review.
  11. Digital Health Technologies Enabling Partnerships in Chronic Care Management: Scoping Review.
  12. Patient and Family Involvement in Serious Incident Investigations From the Perspectives of Key Stakeholders: A Review of the Qualitative Evidence.
  1. Ann Thorac Surg. 2022 Aug 01. pii: S0003-4975(22)01008-6. [Epub ahead of print]
    Developing an Educational and Decision Support Tool for Stage I Lung Cancer using Decision Science.
    Ashley J Housten, Benjamin D Kozower, Kathryn E Engelhardt, Clifford Robinson, Varun Puri, Pamela Samson, Krista Cooksey, Mary C Politi.
       BACKGROUND: Guidelines recommend shared decision making about treatment options for high-risk, operable stage I lung cancer. Patient decision aids can facilitate shared decision making; however, their development, implementation, and evaluation in routine clinical practice presents numerous challenges and opportunities.
    METHODS: The purpose of this review is to reflect on the process of tool development, the challenges associated with meeting the needs of patients, clinicians from multiple disciplines, and institutional workflow during implementation; and propose recommendations for future clinicians who wish to develop, refine, or implement similar tools into routine care.
    RESULTS: In this review, we: 1) discuss guidelines for decision aid development; 2) describe how we applied those to create an education and decision support tool for patients with clinical stage I lung cancer deciding between radiation therapy and surgical resection, and 3) highlight challenges in implementing and evaluating the tool.
    CONCLUSIONS: We provide recommendations for those seeking to develop, refine, or implement similar tools into routine care.
    Keywords:  Lung cancer; Patient Decision Aids; Radiation; Shared Decision Making; Surgery
    DOI:  https://doi.org/10.1016/j.athoracsur.2022.07.019
  2. Med J Aust. 2022 Jul 31.
    More than a fleeting conversation: managing medication communication across transitions of care.
    Elizabeth Manias, Carmel Hughes, Robyn E Woodward-Kron, Christine M Jorm, Guncag Ozavci, Tracey K Bucknall.
      
    Keywords:  Aged; Clinical decision-making; Continuity of patient care; Health communication; Patient safety; Physician-patient relations; Prescribing; Informed consent; Quality of health care
    DOI:  https://doi.org/10.5694/mja2.51651
  3. J Cancer Educ. 2022 Aug 03.
    Health Literacy and Radiation Therapy: a Current State Assessment of Patient Education Materials.
    Eleni Giannopoulos, Sarah McBain, Meredith Giuliani, Jenney Wang, Victoria Zwicker, Colleen Fox, Janet Papadakos.
      In order to mitigate low levels of health literacy among patients, there is need to evaluate patient education (PE) materials and to ensure that the information is readily accessible to patients. The quality and comprehensiveness of radiation therapy materials were evaluated at fourteen cancer centres. To assess quality, PE leaders independently conducted readability, actionability and understandability assessments of materials. To evaluate comprehensiveness, an assessment was conducted of the scope of symptoms covered in extant materials, and the modality they were produced in (e.g. pamphlet, video). A total of 555 PE materials were reviewed for comprehensiveness and modality and seventy underwent evaluation against health literacy best practice standards. Most materials (n = 64, 91%) had a reading grade level above the recommended grade 6 ([Formula: see text] = 9, range = 4-12). Under half (n = 34, 49%) scored at or above the 80% threshold for understandability ([Formula: see text] = 74%, 33-100%) and just over half (n = 36, 51%) scored at or above the 80% target for actionability ([Formula: see text] = 71%, 33-100%). Only two cancer centres (n = 2/14, 14%) had PE materials covering the breadth of symptoms related to radiation therapy and the vast majority of materials were pamphlets (89%). Findings indicate that most radiation therapy PE materials used in cancer centres do not meet health literacy best practices, and there is a disparity between cancer centres in the topics that are available to patients and family. This evaluation highlights the need to better incorporate health literacy best practices into the development of radiation therapy PE materials and strategies to improve accessibility of such health information.
    Keywords:  Cancer; Health literacy; Patient education; Radiation therapy
    DOI:  https://doi.org/10.1007/s13187-022-02208-1
  4. J Am Med Inform Assoc. 2022 Aug 04. pii: ocac129. [Epub ahead of print]
    Patient judgments about hypertension control: the role of patient numeracy and graph literacy.
    Victoria A Shaffer, Pete Wegier, K D Valentine, Sean Duan, Shannon M Canfield, Jeffery L Belden, Linsey M Steege, Mihail Popescu, Richelle J Koopman.
       OBJECTIVE: To assess the impact of patient health literacy, numeracy, and graph literacy on perceptions of hypertension control using different forms of data visualization.
    MATERIALS AND METHODS: Participants (Internet sample of 1079 patients with hypertension) reviewed 12 brief vignettes describing a fictitious patient; each vignette included a graph of the patient's blood pressure (BP) data. We examined how variations in mean systolic blood pressure, BP standard deviation, and form of visualization (eg, data table, graph with raw values or smoothed values only) affected judgments about hypertension control and need for medication change. We also measured patient's health literacy, subjective and objective numeracy, and graph literacy.
    RESULTS: Judgments about hypertension data presented as a smoothed graph were significantly more positive (ie, hypertension deemed to be better controlled) then judgments about the same data presented as either a data table or an unsmoothed graph. Hypertension data viewed in tabular form was perceived more positively than graphs of the raw data. Data visualization had the greatest impact on participants with high graph literacy.
    DISCUSSION: Data visualization can direct patients to attend to more clinically meaningful information, thereby improving their judgments of hypertension control. However, patients with lower graph literacy may still have difficulty accessing important information from data visualizations.
    CONCLUSION: Addressing uncertainty inherent in the variability between BP measurements is an important consideration in visualization design. Well-designed data visualization could help to alleviate clinical uncertainty, one of the key drivers of clinical inertia and uncontrolled hypertension.
    Keywords:  data visualization; hypertension; primary care; risk perception
    DOI:  https://doi.org/10.1093/jamia/ocac129
  5. PLoS One. 2022 ;17(8): e0271884
    Speech recognition can help evaluate shared decision making and predict medication adherence in primary care setting.
    Maxim Topaz, Maryam Zolnoori, Allison A Norful, Alexis Perrier, Zoran Kostic, Maureen George.
       OBJECTIVE: Asthma is a common chronic illness affecting 19 million US adults. Inhaled corticosteroids are a safe and effective treatment for asthma, yet, medication adherence among patients remains poor. Shared decision-making, a patient activation strategy, can improve patient adherence to inhaled corticosteroids. This study aimed to explore whether audio-recorded patient-primary care provider encounters can be used to: 1. Evaluate the level of patient-perceived shared decision-making during the encounter, and 2. Predict levels of patient's inhaled corticosteroid adherence.
    MATERIALS AND METHODS: Shared decision-making and inhaled corticosteroid adherence were assessed using the SDM Questionnaire-9 and the Medication Adherence Report Scale for Asthma (MARS-A). Speech-to-text algorithms were used to automatically transcribe 80 audio-recorded encounters between primary care providers and asthmatic patients. Machine learning algorithms (Naive Bayes, Support Vector Machines, Decision Tree) were applied to achieve the study's predictive goals.
    RESULTS: The accuracy of automated speech-to-text transcription was relatively high (ROUGE F-score = .9). Machine learning algorithms achieved good predictive performance for shared decision-making (the highest F-score = .88 for the Naive Bayes) and inhaled corticosteroid adherence (the highest F-score = .87 for the Support Vector Machines).
    DISCUSSION: This was the first study that trained machine learning algorithms on a dataset of audio-recorded patient-primary care provider encounters to successfully evaluate the quality of SDM and predict patient inhaled corticosteroid adherence.
    CONCLUSION: Machine learning approaches can help primary care providers identify patients at risk for poor medication adherence and evaluate the quality of care by measuring levels of shared decision-making. Further work should explore the replicability of our results in larger samples and additional health domains.
    DOI:  https://doi.org/10.1371/journal.pone.0271884
  6. Health Policy. 2022 Jul 20. pii: S0168-8510(22)00191-9. [Epub ahead of print]
    Public and patient involvement in health policy decision-making on the health system level - A scoping review.
    Lisa Ann Baumann, Anna Katharina Reinhold, Anna Levke Brütt.
      
    DOI:  https://doi.org/10.1016/j.healthpol.2022.07.007
  7. J Health Organ Manag. 2022 Aug 04. ahead-of-print(ahead-of-print):
    Causes, impacts and possible mitigation of non-attendance of appointments within the National Health Service: a literature review.
    Rebecca Wilson, Yvette Winnard.
       PURPOSE: Missed appointments within the National Health Service (NHS) are a drain on resources, associated with not only considerable time and cost implications, but also sub-optimal health outcomes. This literature review aims to explore non-attendance within the NHS in relation to causes, impacts and possible mitigation of negative effects of missed appointments.
    DESIGN/METHODOLOGY/APPROACH: MEDLINE, CINAHL Plus and PubMed were searched with a date range of 2016-2021. Databases were searched for peer-reviewed articles published in English addressing non-attendance of adults within the NHS. Studies were excluded if they were theoretical papers, dissertations or research concerning patients aged under 18. A total of 21 articles met the inclusion criteria and were selected for analysis.
    FINDINGS: The results indicate a significant association of non-attendance and poor health outcomes. Patients from a lower socioeconomic status, adults aged over 85 and those with multiple co-morbidities are more likely to miss appointments. The most commonly reported patient-centred reasons for failing to attend were forgetfulness, transportation difficulties, and family commitments. Practice-specific reasons were cited as inefficiencies of the appointment booking system, failure of traditional reminders and inconvenient timings. Interventions included text reminder services, the inclusion of costs within reminders and enhanced patient involvement with the booking process.
    ORIGINALITY/VALUE: Non-attendance is complex, and to secure maximum attendance, targeted interventions are required by healthcare facilities to ensure patient needs are met. The adaption of scheduling systems and healthcare services can assist in reducing DNA rates.
    Keywords:  DNA; Did not attend; Healthcare; Missed appointment; NHS; National health service; Non-attendance
    DOI:  https://doi.org/10.1108/JHOM-11-2021-0425
  8. Front Public Health. 2022 ;10 915438
    Patient involvement in priority-setting for medical research: A mini review of initiatives in the rare disease field.
    Amelia Katirai, Atsushi Kogetsu, Kazuto Kato, Beverley Yamamoto.
      Patient involvement (PI) in determining medical research priorities is an important way to ensure that limited research funds are allocated to best serve patients. As a disease area for which research funds are limited, we see a particular utility for PI in priority-setting for medical research on rare diseases. In this review, we argue that PI initiatives are an important form of evidence for policymaking. We conducted a study to identify the extent to which PI initiatives are being conducted in the rare disease field, the features of such initiatives, the trends in the priorities elicited, and the extent to which translation into policy is reported in the academic literature. Here, we report the results of this exploratory review of the English-language literature gathered through online databases and search engines, with the aim of identifying journal articles published prior to December 2020, describing PI initiatives focused on determining priorities for medical research funding in the rare disease field. We identified seven recently-published articles and found that the majority made use of structured methodologies to ensure the robustness of the evidence produced, but found little reported practical implementation or concrete plans for implementation of the results of the initiatives. We conclude that priority-setting initiatives are meaningful mechanisms for involving patients in determining research directions. However, we highlight the importance of translation into policy as a necessary next step to fully utilize the results and move beyond well-intentioned exercises. Finally, we draw attention to the benefits of involving patients throughout this process.
    Keywords:  medical research; patient involvement; priority-setting; rare disease (RD); review
    DOI:  https://doi.org/10.3389/fpubh.2022.915438
  9. J Med Internet Res. 2022 Aug 04. 24(8): e37952
    Digital Patient Experience: Umbrella Systematic Review.
    Tingting Wang, Guido Giunti, Marijke Melles, Richard Goossens.
       BACKGROUND: The adoption and use of technology have significantly changed health care delivery. Patient experience has become a significant factor in the entire spectrum of patient-centered health care delivery. Digital health facilitates further improvement and empowerment of patient experiences. Therefore, the design of digital health is served by insights into the barriers to and facilitators of digital patient experience (PEx).
    OBJECTIVE: This study aimed to systematically review the influencing factors and design considerations of PEx in digital health from the literature and generate design guidelines for further improvement of PEx in digital health.
    METHODS: We performed an umbrella systematic review following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) methodology. We searched Scopus, PubMed, and Web of Science databases. Two rounds of small random sampling (20%) were independently reviewed by 2 reviewers who evaluated the eligibility of the articles against the selection criteria. Two-round interrater reliability was assessed using the Fleiss-Cohen coefficient (k1=0.88 and k2=0.80). Thematic analysis was applied to analyze the extracted data based on a small set of a priori categories.
    RESULTS: The search yielded 173 records, of which 45 (26%) were selected for data analysis. Findings and conclusions showed a great diversity; most studies presented a set of themes (19/45, 42%) or descriptive information only (16/45, 36%). The digital PEx-related influencing factors were classified into 9 categories: patient capability, patient opportunity, patient motivation, intervention technology, intervention functionality, intervention interaction design, organizational environment, physical environment, and social environment. These can have three types of impacts: positive, negative, or double edged. We captured 4 design constructs (personalization, information, navigation, and visualization) and 3 design methods (human-centered or user-centered design, co-design or participatory design, and inclusive design) as design considerations.
    CONCLUSIONS: We propose the following definition for digital PEx: "Digital patient experience is the sum of all interactions affected by a patient's behavioral determinants, framed by digital technologies, and shaped by organizational culture, that influence patient perceptions across the continuum of care channeling digital health." In this study, we constructed a design and evaluation framework that contains 4 phases-define design, define evaluation, design ideation, and design evaluation-and 9 design guidelines to help digital health designers and developers address digital PEx throughout the entire design process. Finally, our review suggests 6 directions for future digital PEx-related research.
    Keywords:  digital health; eHealth; human-computer interaction; influencing factors; mHealth; mobile health; patient experience; telehealth; telemedicine; user experience; user-centered design
    DOI:  https://doi.org/10.2196/37952
  10. Palliat Support Care. 2022 Aug 01. 1-10
    End-of-life dreams and visions: A systematic integrative review.
    Alison Hession, Tim Luckett, Sungwon Chang, David Currow, Michael Barbato.
       OBJECTIVES: End-of-life dreams and visions (ELDVs) have been reported throughout history. We aimed to synthesize the research literature on ELDVs to determine the proportions of patients, bereaved families, healthcare professionals, and volunteers reporting ELDVs; ELDV content, timing, and interpretation; and any evidence-based approaches to ELDV-related care.
    METHODS: A systematic review protocol was registered with PROSPERO (CRD4021282929). CINAHL, Medline, Embase, Emcare, and APA PsycInfo were searched for peer-reviewed English language articles reporting qualitative, quantitative, or mixed methods studies that explored reports of ELDVs by patients, bereaved families, healthcare professionals, or volunteers. Synthesis used both meta-analysis and a narrative approach.
    RESULTS: Of 2,045 papers identified by searches, 22 were included, describing 18 studies in a variety of settings. Meta-analyses indicated that 77% (95% confidence intervals [CIs] 69-84%) of patients (n = 119) reported an ELDV compared with 32% (95% CIs 21-44%) of bereaved relatives (n = 2,444) and that 80% (95% CIs 59-94%) of healthcare professionals (n = 171) reported either witnessing or being told of an ELDV in the preceding 5 years. Studies of volunteers reported 34% (95% CIs 20-48%) (n = 45) either witnessing or being told of an ELDV over their entire period of service, with 49% of volunteers (95% CIs 33-64%) (n = 39) reporting events occurring in the preceding year. ELDVs reported by patients, bereaved families, healthcare professionals, and volunteers were perceived as being a source of comfort. Healthcare professionals and volunteers expressed a need for further education on how to support patients experiencing ELDVs and their families.
    SIGNIFICANCE OF RESULTS: ELDVs are experienced by the majority of dying patients and need consideration in delivering holistic end-of-life care. Little if any research has been conducted in acute care facilities.
    Keywords:  End-of-life dreams and visions; Hallucinations/delirium; Palliative care; Systematic review; Terminal care
    DOI:  https://doi.org/10.1017/S1478951522000876
  11. J Med Internet Res. 2022 Aug 01. 24(8): e38980
    Digital Health Technologies Enabling Partnerships in Chronic Care Management: Scoping Review.
    Carolina Wannheden, Matilda Åberg-Wennerholm, Marie Dahlberg, Åsa Revenäs, Sara Tolf, Elena Eftimovska, Mats Brommels.
       BACKGROUND: An increasing number of patients expect and want to play a greater role in their treatment and care decisions. This emphasizes the need to adopt collaborative health care practices, which implies collaboration among interprofessional health care teams and patients, their families, caregivers, and communities. In recent years, digital health technologies that support self-care and collaboration between the community and health care providers (ie, participatory health technologies) have received increasing attention. However, knowledge regarding the features of such technologies that support effective patient-professional partnerships is still limited.
    OBJECTIVE: This study aimed to map and assess published studies on participatory health technologies intended to support partnerships among patients, caregivers, and health care professionals in chronic care, focusing specifically on identifying the main features of these technologies.
    METHODS: A scoping review covering scientific publications in English between January 2008 and December 2020 was performed. We searched PubMed and Web of Science databases. Peer-reviewed qualitative, quantitative, and mixed methods studies that evaluated digital health technologies for patient-professional partnerships in chronic care settings were included. The data were charted and analyzed thematically. The PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist was used.
    RESULTS: This review included 32 studies, reported in 34 papers. The topic of participatory health technologies experienced a slightly increasing trend across publication years, with most papers originating from the United States and Norway. Diabetes and cardiovascular diseases were the most common conditions addressed. Of the 32 studies, 12 (38%) evaluated the influence of participatory health technologies on partnerships, mostly with positive outcomes, although we also identified how partnership relationships and the nature of collaborative work could be challenged when the roles and expectations between users were unclear. Six common features of participatory health technologies were identified: patient-professional communication, self-monitoring, tailored self-care support, self-care education, care planning, and community forums for peer-to-peer interactions.
    CONCLUSIONS: Our findings emphasize the importance of clarifying mutual expectations and carefully considering the implications that the introduction of participatory health technologies may have on the work of patients and health care professionals, both individually and in collaboration. A knowledge gap remains regarding the use of participatory health technologies to effectively support patient-professional partnerships in chronic care management.
    Keywords:  chronic disease; cocare; collaborative care; digital health; eHealth; long-term conditions; mobile phone; participatory health; participatory health informatics; partnership care management; scoping review
    DOI:  https://doi.org/10.2196/38980
  12. J Patient Saf. 2022 Aug 02.
    Patient and Family Involvement in Serious Incident Investigations From the Perspectives of Key Stakeholders: A Review of the Qualitative Evidence.
    Lauren Ramsey, Siobhan McHugh, Ruth Simms-Ellis, Kayley Perfetto, Jane K O'Hara.
       OBJECTIVES: Investigations of healthcare harm often overlook the valuable insights of patients and families. Our review aimed to explore the perspectives of key stakeholders when patients and families were involved in serious incident investigations.
    METHODS: The authors searched three databases (Medline, PsycInfo, and CINAHL) and Connected Papers software for qualitative studies in which patients and families were involved in serious incident investigations until no new articles were found.
    RESULTS: Twenty-seven papers were eligible. The perspectives of patients and families, healthcare professionals, nonclinical staff, and legal staff were sought across acute, mental health and maternity settings. Most patients and families valued being involved; however, it was important that investigations were flexible and sensitive to both clinical and emotional aspects of care to avoid compounding harm. This included the following: early active listening with empathy for trauma, sincere and timely apology, fostering trust and transparency, making realistic timelines clear, and establishing effective nonadversarial communication. Most staff perceived that patient and family involvement could improve investigation quality, promote an open culture, and help ensure future safety. However, it was made difficult when multidisciplinary input was absent, workload and staff turnover were high, training and support needs were unmet, and fears surrounded litigation. Potential solutions included enhancing the clarity of roles and responsibilities, adequately training staff, and providing long and short-term support to stakeholders.
    CONCLUSIONS: Our review provides insights to ensure patient and family involvement in serious incident investigations considers both clinical and emotional aspects of care, is meaningful for all key stakeholders, and avoids compounding harm. However, significant gaps in the literature remain.
    DOI:  https://doi.org/10.1097/PTS.0000000000001054
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