bims-paceca Biomed News
on Patient-centred care
Issue of 2022–06–26
twenty-one papers selected by
Rob Penfold, Queensland Health
  1. Shared decision making in rheumatology: A scoping review.
  2. Patient Perspective: Importance and How to Elicit.
  3. Systematic review of effectiveness and quality assessment of patient education materials and decision aids for breathlessness.
  4. Essential Elements of Communication.
  5. 'I knew I'd be taken care of': Exploring patient experiences in the Emergency Department.
  6. Including the voice of paediatric patients: Cocreation of an engagement game.
  7. Breast cancer patients' most important quality of life themes for a radiotherapy decision aid.
  8. Comparison of innovative communication approaches in nutrition to promote and improve health literacy.
  9. The Choosing Wisely campaign and shared decision-making with Māori.
  10. Mammography and Decision Aid Use for Breast Cancer Screening in Older Women.
  11. Question prompt lists to improve communication between cancer patients and healthcare professionals.
  12. Person-centred care to prevent hospitalisations - a focus group study addressing the views of healthcare providers.
  13. The Impact of Patient Support Programs in Europe: A Systematic Literature Review.
  14. Obesity-friendly language.
  15. Factors Associated with Decision Aid Use in Localized Prostate Cancer.
  16. Making knowledge clips with patients: What learning mechanisms are triggered in medical students?
  17. Physicians' responses to advanced cancer patients' existential concerns: A video-based analysis.
  18. Establishing Goals of Care.
  19. Delivering Bad News.
  20. Patient perspectives on the use of health information.
  21. A scoping review to identify and describe the characteristics of theories, models and frameworks of health research partnerships.
  1. Semin Arthritis Rheum. 2022 Jun 03. pii: S0049-0172(22)00092-0. [Epub ahead of print]56 152041
    Shared decision making in rheumatology: A scoping review.
    Tessalyn Morrison, Erin Foster, Jacob Dougherty, Jennifer Barton.
       INTRODUCTION: Shared decision making is a collaborative process where patients and clinicians work together to understand the patient's situation and to determine how best to address it. While shared decision making offers benefits for patients and clinicians, shared decision making use across the field of rheumatology has not been previously described.
    OBJECTIVE: To perform a scoping review of research on shared decision making in rheumatology METHODS: We analyzed literature on shared decision making in rheumatology from Ovid MEDLINE, PsycINFO, Sciverse Scopus, EBM Reviews, and PsycARTICLES.
    RESULTS: Of 3191 articles screened, 63 studies were included for analysis. Shared decision making in rheumatology improves patient satisfaction and adherence to treatment plans. We identified 13 patient decision aids from the studies and discussed the process of evaluating patient decision aids and shared decision making outcomes. The most important factors for decision making were understanding benefits versus side effects, medication logistics, and cost. Decision making conversations are affected by age, race, socioeconomic status, gender, health literacy, and language proficiency. Barriers to shared decision making include time constraints and training.
    CONCLUSIONS: Our review identified 63 studies of shared decision making in rheumatology, including 13 studies of patient decision aids. Future areas of research include identifying tools for shared decision making, understanding social and cultural factors, and improving equity in shared decision making practices. By improving shared decision making practices in rheumatology, we can strive to improve patient experience, satisfaction, trust, and enhance outcomes for all.
    Keywords:  Patient decision aids; Qualitative; Rheumatology; Scoping review; Shared decision-making
    DOI:  https://doi.org/10.1016/j.semarthrit.2022.152041
  2. Med Clin North Am. 2022 Jul;pii: S0025-7125(22)00013-X. [Epub ahead of print]106(4): 569-576
    Patient Perspective: Importance and How to Elicit.
    Mark A Lewis, David Bustillo.
      The authors present models for patient care, reflecting on its modernization. A review of technology including electronic health records is provided, noting its benefits and constraints on the patient-clinician relationship. Keeping in mind the fact that patients are the "end users" of health care systems, several approaches to improving patient experience are shared.
    Keywords:  Communication; Electronic health record; Health communication; Interpersonal; Paternalism; Patient preference; Shared decision making
    DOI:  https://doi.org/10.1016/j.mcna.2022.01.013
  3. BMC Pulm Med. 2022 Jun 20. 22(1): 237
    Systematic review of effectiveness and quality assessment of patient education materials and decision aids for breathlessness.
    Anthony Paulo Sunjaya, Lexia Bao, Allison Martin, Gian Luca DiTanna, Christine R Jenkins.
       BACKGROUND: Around 10% of adults suffer from clinically significant breathlessness. High quality and actionable patient education materials (PEMs) and patient decision aids (PDAs) have an important role for shared decision making and patient self-management.
    OBJECTIVE: To systematically assess the effectiveness of patient education materials (PEMs) and patient decision aids (PDAs) on clinical outcomes. Secondly, to assess the quality of PEMs and PDAs for breathlessness that are accessible online.
    METHODS: A systematic review of PEM or PDA intervention for breathlessness published between 1 January 2010 and November 2020 was conducted. An environmental scan and quality assessment of publicly available PEMs and PDAs was also conducted.
    RESULTS: Out of 2985 records, five studies were eligible for inclusion in this systematic review. Results of two randomised controlled trials suggest potential effectiveness of PEMs to improve patient reported outcomes and reduce healthcare utilization. In the environmental scan, 88 materials were included. Minimum reading age for most was high (Grade 10) and PEMs scored an average of 87% for understandability and 67% for actionability. Based on the DISCERN tool only 10 were classified as high quality.
    CONCLUSION: There is a paucity of evidence on the effectiveness of PEMs and PDAs for improvement in breathlessness. There is a need to develop higher quality PEMs for breathlessness.
    Keywords:  Breathlessness; Patient decision aid; Patient education materials; Shared decision making
    DOI:  https://doi.org/10.1186/s12890-022-02032-9
  4. Med Clin North Am. 2022 Jul;pii: S0025-7125(22)00004-9. [Epub ahead of print]106(4): 557-567
    Essential Elements of Communication.
    Heather Hofmann, Gregorie Constant-Peter, Ruth Ellen Bledsoe Pearlman.
      Relationship-centered communication (RCC) is an effective approach to patient-provider communication. This article describes RCC components known as the essential elements of communication. The article also describes current standard conceptual models for applying RCC to the patient encounter, including a structure for relationship building. The authors also explore the challenges to using RCC.
    Keywords:  Communication; Health care; Health communication; Patient-centered care; Physician-patient relations; Relationship-centered
    DOI:  https://doi.org/10.1016/j.mcna.2022.01.004
  5. J Adv Nurs. 2022 Jun 19.
    'I knew I'd be taken care of': Exploring patient experiences in the Emergency Department.
    Claudia Bull, Sharon Latimer, Julia Crilly, David Spain, Brigid M Gillespie.
       AIMS: To explore adult Emergency Department patient experiences to inform the development of a new Emergency Department patient-reported experience measure.
    DESIGN: Descriptive, exploratory qualitative study using semi-structured individual interviews with adult Emergency Department patients.
    METHODOLOGY: Participants were recruited across two Emergency Departments in Southeast Queensland, Australia during September and October 2020. Purposive sampling based on maximum variation was used. Participants were recruited during their Emergency Department presentation and interviewed in 2-weeks via telephone. Inductive thematic analysis followed the approach proposed by Braun and Clarke (2012).
    RESULTS: Thirty participants were interviewed, and four themes were inductively identified: Caring relationships between patients and Emergency Department care providers; Being in the Emergency Department environment; Variations in waiting for care; and Having a companion in the Emergency Department. Caring relationships between patients and Emergency Department care providers included being treated like a person and being cared for, being informed about and included in care, and feeling confident in care providers. Being in the Emergency Department environment included being around other patients, feeling comfortable and having privacy. Variations in waiting for care included expecting a longer wait, waiting throughout the Emergency Department journey and receiving timely care. Having a companion in the Emergency Department included not feeling alone, and observing care providers engage with companions.
    CONCLUSION: Patient experiences in the Emergency Department are multifaceted, and themes are not mutually exclusive. These findings demonstrate consistency with the core experiential themes identified in the international literature.
    IMPACT: Strategies to improve patient engagement in shared decision-making, and communication between patients and care providers about wait times will be critical to optimizing Emergency Department patient experiences, and person-centred practice. These findings holistically conceptualize patient experiences in the Emergency Department which is the first step to developing a new Emergency Department patient-reported experience measure.
    Keywords:  communication; emergency department; interviews; nursing; patient experience; qualitative research; relationships; shared decision-making; waiting
    DOI:  https://doi.org/10.1111/jan.15317
  6. Health Expect. 2022 Jun 24.
    Including the voice of paediatric patients: Cocreation of an engagement game.
    Lorynn Teela, Lieke E Verhagen, Mariken P Gruppen, Maria J Santana, Martha A Grootenhuis, Lotte Haverman.
       BACKGROUND: Engaging patients in health care, research and policy is essential to improving patient-important health outcomes and the quality of care. Although the importance of patient engagement is increasingly acknowledged, clinicians and researchers still find it difficult to engage patients, especially paediatric patients. To facilitate the engagement of children and adolescents in health care, the aim of this project is to develop an engagement game.
    METHODS: A user-centred design was used to develop a patient engagement game in three steps: (1) identification of important themes for adolescents regarding their illness, treatment and hospital care, (2) evaluation of the draft version of the game and (3) testing usability in clinical practice. Adolescents (12-18 years) were engaged in all steps of the development process through focus groups, interviews or a workshop. These were audio-recorded, transcribed verbatim and analysed in MAXQDA.
    RESULTS: (1) The important themes for adolescents (N = 15) were included: visiting the hospital, participating, disease and treatment, social environment, feelings, dealing with staff, acceptation, autonomy, disclosure and chronically ill peers. (2) Then, based on these themes, the engagement game was developed and the draft version was evaluated by 13 adolescents. Based on their feedback, changes were made to the game (e.g., adjusting the images and changing the game rules). (3) Regarding usability, the pilot version was evaluated positively. The game helped adolescents to give their opinion. Based on the feedback of adolescents, some last adjustments (e.g., changing colours and adding a game board) were made, which led to the final version of the game, All Voices Count.
    CONCLUSIONS: Working together with adolescents, All Voices Count, a patient engagement game was developed. This game provides clinicians with a tool that supports shared decision-making to address adolescents' wishes and needs.
    PATIENT OR PUBLIC CONTRIBUTION: Paediatric patients, clinicians, researchers, youth panel of Fonds NutsOhra and patient associations (Patient Alliance for Rare and Genetic Diseases, Dutch Childhood Cancer Organization) were involved in all phases of the development of the patient engagement game-from writing the project plan to the final version of the game.
    Keywords:  adolescent; codevelopment; paediatrics; patient engagement; patient participation; shared decision-making; user-centred design
    DOI:  https://doi.org/10.1111/hex.13530
  7. Breast. 2022 Jun 10. pii: S0960-9776(22)00103-5. [Epub ahead of print]65 8-14
    Breast cancer patients' most important quality of life themes for a radiotherapy decision aid.
    Cheryl Roumen, Hajar Hasannejadasl, Rachelle Swart, Daniela Raphael, Leonard Wee, Matthijs Sloep, Desiree H J G van den Bongard, Helena Verkooijen, Salina Thijssen, Mirjam Velting, Maaike Schuurman, Nicola S Russell, Rianne Fijten, Liesbeth J Boersma.
       BACKGROUND AND AIM: The BRASA patient decision aid (BRASA-PtDA) facilitates shared decision making for breast cancer patients (BCPs) facing a radiotherapy treatment decision. During evaluations, patients indicated the wish for quantitative information on side effects. Therefore, this study assessed BCPs opinion on which and how information on side effects should be incorporated in the BRASA-PtDA.
    METHODS: A workshop was organized with BCPs (n = 9), researchers (n = 5) and clinicians (n = 3). Subsequently, a survey was sent to BCPs (n = 744) investigating the generalisability of the workshop findings, and posing additional questions. The survey entailed multiple choice questions on quality of life themes, the use of a decision aid and risk communication.
    RESULTS: The workshop revealed BCPs wish for a layered, all encompassing information system. Information on the impact of side effects on daily life was preferred above the risk of these side effects. The survey revealed that important quality of life (QoL) themes were having energy (81%; n = 605), arm function (61%; n = 452), pain (55%; n = 410). Despite the focus on qualitative effects in the workshop, 89% of the survey respondents also wanted to be informed on individualized risks of side effects. 54% Of the survey respondents had never heard of a PtDA.
    CONCLUSIONS: BCPs preferred information on the impact of side effects, but also their individualized risks on side effects. Most important QoL themes were having enough energy, arm function and pain. Consequently, the BRASA-PtDA should be reshaped, starting with quality of life themes, rather than side effects.
    Keywords:  Breast cancer; Patient empowerment; Patient support tool; Shared decision making (SDM)
    DOI:  https://doi.org/10.1016/j.breast.2022.06.002
  8. Ulster Med J. 2022 May;91(2): 85-91
    Comparison of innovative communication approaches in nutrition to promote and improve health literacy.
    Hannah L Anderson, John E Moore, Beverley C Millar.
      The translation of scientific evidence into guidelines and advice is a fundamental aspect of scientific communication within nutrition and dietetics. For communication to be effective for all patients, health literacy (HL) must be considered, i.e. an individual's capacity to obtain, comprehend and utilise information to empower decision-making and promote their own health. HL levels are varied and difficult to judge on an individual basis and have not been quantified, thus not giving a population mean HL competency indication. It has been evidenced that most of the working age population in England cannot comprehend healthcare materials due to complexity, thereby promoting a need for agreed readability thresholds for written healthcare information. A wide range of modalities within dietetics are used to communicate to a varied audience with the primary form written, e.g. journal articles, plain language summaries and leaflets. Audio/visual and digital communications are increasing in dietetic care and welcomed by patients; however, the effectiveness of such approaches has not been studied thoroughly and digital exclusion remains a concern. Communication considering a patient's HL level leads to empowerment which is key to effective management of chronic diseases with a high treatment burden. Therefore; this review will focus on the importance of modalities used to communicate science in nutrition to ensure they are appropriate in relation to Health Literacy.
    Keywords:  cystic fibrosis (CF); effective communication; health literacy; readability; scientific communication
  9. N Z Med J. 2021 Dec 17. 134(1547): 26-33
    The Choosing Wisely campaign and shared decision-making with Māori.
    David Tipene-Leach, Anna Adcock, Sally Abel, Derek Sherwood.
       AIMS: Choosing Wisely seeks to prevent harm by reducing the number of unnecessary tests, treatments and procedures, and by promoting shared decision-making. This article scopes perspectives of Māori patients/consumers and Māori health practitioners around Choosing Wisely and explores shared decision-making between Māori and their medical practitioners.
    METHODS: Eight Māori consumers and seven Māori health practitioners participated in a qualitative, semi-structured, in-depth interview study with an inductive thematic analysis.
    RESULTS: Participant feedback spanned issues from lack of Māori participation in programme governance through to practical issues like meaningful and literacy-appropriate health messaging, traversing consumer, practitioner, organisational and health-system aspects. Feedback further focused on the patient having trust in the practitioner, a sense of autonomy and the availability of advocacy and support in the consultation.
    CONCLUSIONS: Despite a late campaign collaboration with Māori, Choosing Wisely New Zealand is the first of the international programmes to acknowledge the possibility that their initiative might increase inequity for Indigenous populations. This enquiry highlights the need to consult Māori early and to infuse Treaty principles and Māori knowledge and custom at every stage of the programme.
  10. Am J Prev Med. 2022 Jun 16. pii: S0749-3797(22)00228-8. [Epub ahead of print]
    Mammography and Decision Aid Use for Breast Cancer Screening in Older Women.
    Rachel L Ross, Karl Rubio, Hector P Rodriguez.
       INTRODUCTION: Decision aids for breast cancer screening are increasingly being used by physicians, but the association between physician practice decision-aid use and mammography rates remains uncertain. Using national data, this study examines the association between practice-level decision-aid use and mammography use among older women.
    METHODS: Physician practice responses to the 2017/2018 National Survey of Healthcare Organizations and Systems (n=1,236) were linked to 2016 and 2017 Medicare fee-for-service beneficiary data from eligible beneficiaries (n=439,684) aged 65-74 years. In 2021, multivariable generalized linear models estimated the association of practice decision-aid use for breast cancer screening and advanced health information technology functions with mammography use, controlling for practice and beneficiary characteristics.
    RESULTS: Overall, 60.1% of eligible beneficiaries had a screening mammogram, and 37.3% of physician practices routinely used decision aids for breast cancer screening. In adjusted analyses, advanced health information technology functions (OR=1.19, p=0.04) were associated with mammography use, but practice use of decision aids was not (OR=0.95, p=0.21). Beneficiary clinical and socioeconomic characteristics, including race, comorbidities, Medicare and Medicaid eligibility, and median household income were more strongly associated with mammography use than practice-level decision-aid use or advanced health information technology functions.
    CONCLUSIONS: Health information technology‒enabled automation of mammography reminders and other advanced health information technology functions may support mammography, whereas breast cancer decision aids may reduce patients' propensities to be screened through the alignment of their preferences and screening decision. More resources may be needed for decision aids to be routinely implemented to improve solicitation of patient preferences and targeting of mammography services.
    DOI:  https://doi.org/10.1016/j.amepre.2022.04.014
  11. Curr Opin Oncol. 2022 Jun 23.
    Question prompt lists to improve communication between cancer patients and healthcare professionals.
    Johanna Terrasson, Aude Rault, Sylvie Dolbeault, Anne Brédart.
       PURPOSE OF THE REVIEW: This literature review sets out to summarize knowledge on the impact of question prompt lists (QPLs) on patient-physician communication in oncology and to provide an account of current research on the development, adaptation, and implementation of this type of communication tool.
    RECENT FINDINGS: Provided with a QPL, patients seem to ask more questions, in particular on sensitive issues like those around the end-of-life period and they recall the information provided better. There is a need to adapt QPLs, taking account of divergences in attitudes towards illness, participation in decision-making, and discussions about the illness prognosis across cultures. QPLs may also need to be tailored to specific concerns of patients at the different stages in the care trajectory and to the particularities of each cancer type. These adaptations contribute to the effectiveness of the tool because they make it possible to tailor it to the challenges and constraints experienced in clinical practice.
    SUMMARY: QPLs are designed to enhance patients' communication with their physicians. Further research is required to develop QPLs suited to each cultural and clinical setting, involving health professionals so as to facilitate the implementation of these tools in routine practice.
    DOI:  https://doi.org/10.1097/CCO.0000000000000840
  12. BMC Health Serv Res. 2022 Jun 20. 22(1): 801
    Person-centred care to prevent hospitalisations - a focus group study addressing the views of healthcare providers.
    Cecilie Nørby Lyhne, Merete Bjerrum, Marianne Johansson Jørgensen.
       BACKGROUND: The primary healthcare sector comprises various health services, including disease prevention at local level. Research shows that targeted primary healthcare services can prevent the development of acute complications and ultimately reduce the risk of hospitalisations. While interdisciplinary collaboration has been suggested as a means to improve the quality and responsiveness of personal care needs in preventive services, effective implementation remains a challenge. To improve the quality and responsiveness of primary healthcare and to develop initiatives to support the interdisciplinary collaboration in preventive services, there is a need to investigate the views of primary healthcare providers. The aim of this study was to investigate perceptions of preventive care among primary healthcare providers by examining their views on what constitutes a need for hospitalisation, and which strategies are found useful to prevent hospitalisation. Further, to explain how interdisciplinary collaboration can be supported with a view to providing person-centred care.
    METHODS: Five focus group interviews were conducted with 27 healthcare providers, including general practitioners, social and healthcare assistants, occupational therapists, physiotherapists, home care nurses, specialist nurses and acute care nurses. Interviews were transcribed, and analysed with qualitative content analysis.
    RESULTS: Three categories emerged from the analysis: 1) Mental and social conditions influence physical functioning and hospitalisation need, 2) Well-established primary healthcare services are important to provide person-centred care through interdisciplinary collaboration and 3) Interdisciplinary collaboration in primary healthcare services is predominantly focussed on handling acute physical conditions. These describe that the healthcare providers are attentive towards the influence of mental, social and physical conditions on the risk of hospitalisation, entailing a focus on person-centred care. Nevertheless, in the preventive services, interdisciplinary collaboration focusses primarily on handling acute physical conditions, which constitutes a barrier for interdisciplinary collaboration.
    CONCLUSIONS: By focusing on the whole person, it could be possible to provide more person-centred care through interdisciplinary collaboration and ultimately to prevent some hospitalisations. Stakeholders at all levels should be informed about the relevance of considering mental, social and physical conditions to improve the quality and responsiveness of primary healthcare services and to develop initiatives to support interdisciplinary collaboration.
    Keywords:  Care continuity; Care coordination; Care pathways; Person-centered care; Preventable hospitalisation; Prevention; Primary healthcare services; Qualitative interview; Qualitative research; Quality improvement
    DOI:  https://doi.org/10.1186/s12913-022-08198-6
  13. Patient. 2022 Jun 21.
    The Impact of Patient Support Programs in Europe: A Systematic Literature Review.
    José Antonio Sacristán, Esther Artime, Silvia Díaz-Cerezo, Marta Comellas, Lucía Pérez-Carbonell, Luis Lizán.
       BACKGROUND AND OBJECTIVE: Patient support programs aim to provide solutions beyond the medication itself, by enhancing treatment adherence, improving clinical outcomes, elevating patient experience, and/or increasing quality of life. As patient support programs increasingly play an important role in assisting patients, numerous observational studies and pragmatic trials designed to evaluate their impact on healthcare have been conducted in recent years. This review aims to characterize these studies.
    METHODS: A systematic literature review, supplemented by a broad search of gray literature, was conducted following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) and Cochrane recommendations. Observational studies and pragmatic trials conducted in Europe to evaluate the impact of patient support programs, published in English or Spanish between 17/03/2010 and 17/03/2020, were reviewed. Two patient support program definitions were applied starting with Ganguli et al.'s broad approach, followed by the European Medicines Agency definition, narrowed to Marketing Authorization Holders organized systems and their medicines. The quality of publications was assessed using the STROBE (Strengthening the Reporting of Observational Studies in Epidemiology) statement 22-item checklist.
    RESULTS: Of the 49 identified studies following the Ganguli et al. definition, 20 studies met the European Medicines Agency definition and were reviewed. Patient support program impact was evaluated based on a wide range of methodologies: 70% assessed patient support program-related patient-reported outcomes, 55% reported clinical outcomes, and 25% reported economic impacts on health resources. Only 45% conducted a comparative analysis. Overall, 75% of the studies achieved their proposed objectives.
    CONCLUSIONS: The heterogeneity of the observational studies reviewed reflects the complexity of patient support programs that are built ad hoc for specific diseases, treatments, and patients. Results suggest that patient support programs play a key role in promoting treatment effectiveness, clinical outcomes, and satisfaction. However, there is a need for standardizing the definition of patient support programs and the methods to evaluate their impact.
    DOI:  https://doi.org/10.1007/s40271-022-00582-y
  14. J Pak Med Assoc. 2022 Jun;72(6): 1237-1238
    Obesity-friendly language.
    Sanjay Kalra, Nitin Kapoor, Neeta Deshpande.
      This communication describes the style and content of obesity-friendly language, so as to create a positive and welcoming environment for the obese individual accessing health care. Attention to matters of language and conversation style will ensure better a relationship between the patient and provider and facilitate optimal outcomes.
    Keywords:   Motivational interviewing, Overweight, Obese, Person-centred care.
    DOI:  https://doi.org/10.47391/JPMA.22-73
  15. Urol Pract. 2022 Jan;9(1): 108-115
    Factors Associated with Decision Aid Use in Localized Prostate Cancer.
    Giulia I Lane, Ajith Dupati, Ji Qi, Stephanie Ferrante, Rodney L Dunn, Roshan Paudel, Daniela Wittmann, Lauren Wallner, Donna L Berry, Chad Ellimoottil, James Montie, J Quentin Clemens.
       Purpose: Decision aids have been found to improve patients' knowledge of treatments and decrease decisional regrets. Despite these benefits, there is not widespread use of decision aids for newly diagnosed prostate cancer (PCa). This analysis investigates factors that impact men's choice to use a decision aid for newly diagnosed prostate cancer.
    Materials and Methods: This is a retrospective analysis of a PCa registry from the Michigan Urological Surgery Improvement Collaborative (MUSIC). We included data from men with newly diagnosed, clinically localized PCa seen from 2018-21 at practices offering a PCa decision aid (Personal Patient Profile-Prostate; P3P). The primary outcome was men's registration to use P3P. We fit a multilevel logistic regression model with patient-level factors and included urologist specific random intercepts. We estimated the intra-class correlation (ICC) and predicted the probability of P3P registration among urologists.
    Results: A total of 2629 men were seen at practices that participated in P3P and 1174 (45%) registered to use P3P. Forty-one percent of the total variance of P3P registration was attributed to clustering of men under a specific urologist's care. In contrast, only 1.5% of the variance of P3P registration was explained by patient factors. Our model did not include data on socioeconomic, literacy or psychosocial factors, which limits the interpretation of the results.
    Conclusions: These results suggest that urologists' effect far outweighs patient factors in a man's decision to enroll in P3P. Strategies that encourage providers to increase decision aid adoption in their practices are warranted.
    Keywords:  Communication; Decision Making; Decision Support Techniques; Decision aid; Health Services Research; Patient-Centered Care; Prostatic Neoplasms; Shared; Urologic Disease; Urologists
    DOI:  https://doi.org/10.1097/upj.0000000000000283
  16. Patient Educ Couns. 2022 Jun 15. pii: S0738-3991(22)00286-5. [Epub ahead of print]
    Making knowledge clips with patients: What learning mechanisms are triggered in medical students?
    M C L Charlotte Eijkelboom, M Melanie Kalee, R A M Renske de Kleijn, J J Jacqueline van Wijngaarden, R R Roos de Jonge, M F Marieke van der Schaaf, J Joost Frenkel.
       OBJECTIVE: To prepare medical students for a rapidly changing healthcare landscape, where new means of communication emerge, innovative teaching methods are needed. We developed a project-based learning course in which medical students design audiovisual patient information in collaboration with patients and with students in Communication and Information Sciences (CIS). We studied what learning mechanisms are triggered in medical students by elements of a project-based-learning course.
    METHODS: In this qualitative study, twelve sixth year medical students that participated in the course were individually interviewed. Data were analyzed according to the principles of qualitative template analysis.
    RESULTS: We identified four learning mechanisms: Challenging assumptions about patients' information needs; Becoming aware of the origin of patients' information needs; Taking a patient's perspective; Analyzing language to adapt to patients' needs. These learning mechanisms were activated by making a knowledge clip, collaborating with patients, and collaborating with CIS students.
    CONCLUSION: Collaborating with patients helped students to recognize and understand patients' perspectives. Working on a tangible product in partnership with patients and CIS students, triggered students to apply their understanding in conveying information back to patients.
    PRACTICE IMPLICATION: Based on our findings we encourage educators to involve patients as collaborators in authentic assignments for students so they can apply what they learned from taking patients' perspectives.
    Keywords:  Medical education; Patient education; Patient involvement; Person-centered care; Project-based learning
    DOI:  https://doi.org/10.1016/j.pec.2022.06.008
  17. Patient Educ Couns. 2022 Jun 16. pii: S0738-3991(22)00285-3. [Epub ahead of print]
    Physicians' responses to advanced cancer patients' existential concerns: A video-based analysis.
    Berit Hofset Larsen, Tonje Lundeby, Pål Gulbrandsen, Reidun Førde, Jennifer Gerwing.
       OBJECTIVE: In a recent study, we explored what kind of existential concerns patients with advanced cancer disclose during a routine hospital consultation and how they communicate such concerns. The current study builds on these results, investigating how the physicians responded to those concerns.
    METHODS: We analyzed video-recorded hospital consultations involving adult patients with advanced cancer. The study has a qualitative and exploratory design, using procedures from microanalysis of face-to-face-dialogue.
    RESULTS: We identified 185 immediate physician-responses to the 127 patient existential utterances we had previously identified. The responses demonstrated three approaches: giving the patient control over the content, providing support, and taking control over the content. The latter was by far the most common, through which the physicians habitually kept the discussion around biomedical aspects and rarely pursued the patients' existential concerns.
    CONCLUSIONS: Although the physicians, to some extent, allowed the patients to talk freely about their concerns, they systematically failed to acknowledge and address the patients' existential concerns.
    PRACTICE IMPLICATIONS: Physicians should be attentive to their possible habit of steering the agenda towards biomedical topics, hence, avoiding patients' existential concerns. Initiatives cultivating behavior enhancing person-centered and existential communication should be implemented in clinical practice and medical training.
    Keywords:  Advanced cancer; Coping; Existential suffering; Patient-physician communication
    DOI:  https://doi.org/10.1016/j.pec.2022.06.007
  18. Med Clin North Am. 2022 Jul;pii: S0025-7125(22)00007-4. [Epub ahead of print]106(4): 653-662
    Establishing Goals of Care.
    Alex Choi, Tara Sanft.
      Establishing goals of care (GOC) is a crucial component of a patient's treatment plan. The need for better physician-patient communication in this area has been recognized for decades, yet several gaps remain. Challenges exist for both physician and patient. Physicians should pursue a patient-led approach, exercise cultural competency, and use various communication techniques to guide patients when establishing GOC.
    Keywords:  Advanced care planning; Communication; Cultural competency; Family meeting; Goals of care
    DOI:  https://doi.org/10.1016/j.mcna.2022.01.007
  19. Med Clin North Am. 2022 Jul;pii: S0025-7125(22)00027-X. [Epub ahead of print]106(4): 641-651
    Delivering Bad News.
    David Harris, Timothy Gilligan.
      Giving bad news is a recurrent and predictable task in our lives as humans interacting with other humans. This article presents frameworks and best practices that can help us to deliver bad news in health care in a way that is experienced as caring and empathic, and supports the patient as they adjust to their new reality. Key skills include responding to patients' emotions empathically, structuring bad news conversations, leading with an exploration of the patient's understanding and expectations, delivering the bad news clearly and concisely, and individualizing the balance of empathy and support with providing information and developing a plan.
    Keywords:  Bad news; Communication; Emotions; Empathy; Health communication; Hope
    DOI:  https://doi.org/10.1016/j.mcna.2022.02.004
  20. N Z Med J. 2021 Dec 17. 134(1547): 48-62
    Patient perspectives on the use of health information.
    Rosie Dobson, Robyn Whittaker, Helen Wihongi, Penny Andrew, Delwyn Armstrong, Karen Bartholomew, Andrew Sporle, Susan Wells.
       AIM: This survey aimed to investigate patient perspectives, including preferences, needs and concerns, on the use of, and access to, individual healthcare information.
    METHOD: A mixed-methods cross-sectional survey of adult patients (n=1,377) in Waitematā District Health Board inpatient and outpatient services during November-December 2020. The survey was online and on paper and available in 10 languages.
    RESULTS: Over 80% of participants were comfortable with their health information being used across the scenarios presented (range: 81-89%). Māori were significantly more likely than non-Māori to be comfortable with their health information being combined with the health information of others to better understand population needs (p=0.006). The level of comfort with the use of individual health information was related to assurances that its use was for public good, data were stored securely, individual privacy was maintained, the information was accurate and there was communication on how it was used.
    DISCUSSION: This study has shown that most healthcare consumers are comfortable with the health service using their de-identified health information beyond their care if it benefits others.
  21. Health Res Policy Syst. 2022 Jun 18. 20(1): 69
    A scoping review to identify and describe the characteristics of theories, models and frameworks of health research partnerships.
    B J Tittlemier, J Cooper, D Steliga, R L Woodgate, K M Sibley.
       BACKGROUND: Engaging users of health research, namely knowledge users, as partners in the research process may to lead to evidence that is more relevant to the users. This may optimize the uptake of evidence in healthcare practice, resulting in improved health outcomes or more efficient healthcare systems. However, barriers to involving knowledge users in the research process exist. Theories, models and frameworks may help guide the process of involving knowledge users and address barriers to engaging with knowledge users in research; however, there is little evidence identifying or describing the theories, models and frameworks of health research partnerships.
    OBJECTIVES: Identify and describe theories, models and frameworks of health research partnerships. Report on concepts of knowledge user engagement represented in identified theories, models and frameworks.
    METHODS: We conducted a scoping review. Database (MEDLINE, Embase, CINAHL, PCORI) and ancestry and snowball searches were utilized. Included articles were written in English, published between January 2005 and June 2021, specific to health, a research partnership, and referred to a theory, model or framework. No critical appraisal was conducted. We developed a coding framework to extract details related to the publication (e.g. country, year) and theory, model or framework (e.g. intended users, theoretical underpinning, methodology, methods of development, purpose, concepts of knowledge user engagement). One reviewer conducted data extraction. Descriptive statistics and narrative synthesis were utilized to report the results.
    RESULTS: We identified 21 874 articles in screening. Thirty-nine models or frameworks were included in data analysis, but no theory. Two models or frameworks (5%) were underpinned by theory. Literature review was the method (n = 11, 28%) most frequently used to develop a model or framework. Guiding or managing a partnership was the most frequently reported purpose of the model/framework (n = 14, 36%). The most represented concept of knowledge user engagement was principles/values (n = 36, 92%).
    CONCLUSIONS: The models and frameworks identified could be utilized by researchers and knowledge users to inform aspects of a health research partnership, such as guidance or implementation of a partnership. Future research evaluating the quality and applicability of the models and frameworks is necessary to help partners decide which model or framework to implement.
    Keywords:  Frameworks; Knowledge translation; Models; Research partnerships; Theories
    DOI:  https://doi.org/10.1186/s12961-022-00877-4
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