bims-paceca Biomed News
on Patient-centred care
Issue of 2022‒05‒22
28 papers selected by
Rob Penfold
Queensland Health


  1. Braz J Med Biol Res. 2022 ;pii: S0100-879X2022000100101. [Epub ahead of print]55 e12161
      The high burden of kidney disease, global disparities in kidney care, and the poor outcomes of kidney failure place a growing burden on affected individuals and their families, caregivers, and the community at large. Health literacy is the degree to which individuals and organizations have, or equitably enable individuals to have, the ability to find, understand, and use information and services to make informed health-related decisions and actions for themselves and others. Rather than viewing health literacy as a patient deficit, improving health literacy lies primarily with health care providers communicating and educating effectively in codesigned partnership with those with kidney disease. For kidney policy makers, health literacy is a prerequisite for organizations to transition to a culture that places the person at the center of health care. The growing capability of and access to technology provides new opportunities to enhance education and awareness of kidney disease for all stakeholders. Advances in telecommunication, including social media platforms, can be leveraged to enhance persons' and providers' education. The World Kidney Day declares 2022 as the year of "Kidney Health for All" to promote global teamwork in advancing strategies in bridging the gap in kidney health education and literacy. Kidney organizations should work toward shifting the patient-deficit health literacy narrative to that of being the responsibility of health care providers and health policy makers. By engaging in and supporting kidney health-centered policy making, community health planning, and health literacy approaches for all, the kidney communities strive to prevent kidney diseases and enable living well with kidney disease.
    DOI:  https://doi.org/10.1590/1414-431X2022e12161
  2. Health Expect. 2022 May 17.
      BACKGROUND: To support patients in shared decision-making about treatment options, patient decision aids (PtDAs) usually provide benefit/harm information and value clarification methods (VCMs). Recently, personalized risk information from prediction models is also being integrated into PtDAs. This study aimed to design decision-relevant information (i.e., personalized survival rates, harm information and VCMs) about adjuvant breast cancer treatment in cocreation with patients, in a way that suits their needs and is easily understandable.METHODS: Three cocreation sessions with breast cancer patients (N = 7-10; of whom N = 5 low health literate) were performed. Participants completed creative assignments and evaluated prototypes of benefit/harm information and VCMs. Prototypes were further explored through user testing with patients (N = 10) and healthcare providers (N = 10). The researchers interpreted the collected data, for example, creative and homework assignments, and participants' presentations, to identify key themes. User tests were transcribed and analysed using ATLAS.ti to assess the understanding of the prototypes.
    RESULTS: Important information needs were: (a) need for overview/structure of information directly after diagnosis and; (b) need for transparent benefit/harm information for all treatment options, including detailed harm information. Regarding VCMs, patients stressed the importance of a summary/conclusion. A bar graph seemed the most appropriate way of displaying personalized survival rates; the impact of most other formats was perceived as too distressful. The concept of 'personalization' was not understood by multiple patients.
    CONCLUSIONS: A PtDA about adjuvant breast cancer treatment should provide patients with an overview of the steps and treatment options, with layers for detailed information. Transparent information about the likelihood of benefits and harm should be provided. Given the current lack of information on the likelihood of side effects/late effects, efforts should be made to collect and share these data with patients. Further quantitative studies are needed to validate the results and to investigate how the concept of 'personalization' can be communicated.
    PATIENT OR PUBLIC CONTRIBUTION: Ten breast cancer patients participated in three cocreation sessions to develop decision-relevant information. Subsequent user testing included 10 patients. The Dutch Breast Cancer Association (BVN) was involved as an advisor in the general study design.
    Keywords:  breast cancer; cocreation; health literacy; personalized information; risk communication; shared decision-making
    DOI:  https://doi.org/10.1111/hex.13510
  3. Palliat Support Care. 2022 May 18. 1-19
      OBJECTIVE: To systematically review and synthesize the patient-clinician communication experiences of individuals with ovarian cancer.METHODS: The CINAHL, Embase, MEDLINE, PsycINFO, and Web of Science databases were reviewed for articles that described (a) original qualitative or mixed methods research, (b) the experiences of individuals with ovarian cancer, and (c) findings related to patient-clinician communication. Relevant data were extracted from study results sections, then coded for descriptive and analytical themes in accordance with Thomas and Harden's approach to thematic synthesis. Data were coded by two authors and discrepancies were resolved through discussion.
    RESULTS: Of 1,390 unique articles, 65 met criteria for inclusion. Four descriptive themes captured participants' experiences communicating with clinicians: respecting me, seeing me, supporting me, and advocating for myself. Findings were synthesized into three analytical themes: communication is analogous to caring, communication is essential to personalized care, and communication may mitigate or exacerbate the burden of illness.
    SIGNIFICANCE OF RESULTS: Patient-clinician communication is a process by which individuals with ovarian cancer may engage in self-advocacy and appraise the extent to which they are seen, respected, and supported by clinicians. Strategies to enhance patient-clinician communication in the ovarian cancer care setting may promote patient perceptions of patient-centered care.
    Keywords:  Communication; Ovarian neoplasms; Physician–patient relations; Qualitative research; Systematic review
    DOI:  https://doi.org/10.1017/S1478951522000621
  4. Breast Cancer. 2022 May 19.
      BACKGROUND: Patients with breast cancer encounter difficulties in making surgical treatment decisions. Shared decision-making (SDM) with patient decision aids (PDAs) can minimize patients' decisional conflicts. However, the effect of PDAs in Asia remains inconclusive. This study investigated the effect of SDM assisted by PDAs on the decisional conflict of patients with breast cancer.METHODS: In this two-group, outcome assessor-blind, randomized controlled trial, 151 patients diagnosed as having breast cancer were assigned to the PDA (SDM with PDA) group or the standard (SDM without PDA) group. Demographic and clinical variables were analyzed to identify variables affecting the treatment choice. The patients' decision-making difficulties were evaluated using the four-item SURE scale during preoperative hospitalization, and decisional conflicts were examined using the five-item Decision Regret scale and Hospital Anxiety and Depression Scale (HADS) 1 month after surgery.
    RESULTS: The choice of breast conservation therapy and mastectomy did not significantly differ between the PDA and standard groups. The PDA group had a higher level of depression after making decisions (P = 0.029) than did the standard group. No significant difference in the total scores of the SURE scale and Decision Regret scale were noted between the groups.
    CONCLUSION: PDAs did not assist the patients with breast cancer in making breast surgery-related decisions. Clinicians should focus on SDM grounded in evidence-based medicine with care and help patients consider their individual preferences.
    TRIAL REGISTRATION: ClinicalTrial.gov, NCT03105076; April 7, 2017 ( http://www.
    CLINICALTRIALS: gov ).
    Keywords:  Breast cancer; Breast conservation therapy; Decisional conflict; Mastectomy; Patient decision aid; Shared decision-making
    DOI:  https://doi.org/10.1007/s12282-022-01370-0
  5. Stud Health Technol Inform. 2022 May 16. 293 9-10
      BACKGROUND: Patient portals may support patient engagement, yet they may differ largely in their characteristics.OBJECTIVES: To compare the Austrian patient portal with 10 portals from six other countries using the TOPCOP Taxonomy.
    METHODS: We described the portals using openly available information.
    RESULTS: The Austrian patient portal shows basic functionality but lacks further functions that other portals partly offer.
    CONCLUSION: Comparing portals using TOPCOP is possible and shows functions to improve usefulness of portals.
    Keywords:  EHR portal; Medical informatics; patient portal; taxonomy
    DOI:  https://doi.org/10.3233/SHTI220340
  6. Health Expect. 2022 May 20.
      BACKGROUND: Studies have highlighted common challenges and barriers to patient engagement in research, but most were based on patient partners or academic researchers' experiences. A better understanding of how both groups differentially experience their partnership could help identify strategies to improve collaboration in patient engagement research.AIM: To describe and compare patient partners and academic researchers' experiences in patient engagement research.
    METHODS: Based on a participatory approach, a descriptive qualitative study was conducted with patient partners and academic researchers who are involved in the PriCARE research program in primary health care to examine their experience of patient engagement. Individual semi-structured interviews with patient partners (n=7) and academic researchers (n=15) were conducted. Academic researchers' interview verbatims, deidentified patient partners' summaries of their interviews, and summaries of meetings with patient partners were analyzed using inductive thematic analysis in collaboration with patient partners.
    RESULTS: Patient partners and academic researchers' experiences with patient engagement are captured within four themes: 1) evolving relationships; 2) creating an environment that fosters patient engagement; 3) striking a balance; and 4) impact and value of patient engagement. Evolving relationships refers to how partnerships grew and improved over time with an acceptance of tensions and willingness to move beyond them, two-way communication, and leadership of key team members. Creating an environment that fosters patient engagement requires appropriate structural support, such as clear descriptions of patient partner roles; adequate training for all team members; institutional guidance on patient engagement; regular and appropriate translation services and financial assistance. For patient partners and academic researchers, striking a balance referred to the challenge of reconciling patient partners' interests and established research practices. Finally, both groups recognized the value and positive impact of patient engagement in the program in terms of improving the relevance of research and the applicability of results. While patient partners and academic researchers identified similar challenges and strategies, their experiences of patient engagement differed according to their own backgrounds, motives, and expectations.
    CONCLUSION: Both patient partners and academic researchers highlighted the importance of finding a balance between providing structure or guidelines for patient engagement, while allowing for flexibility along the way.
    PATIENT OR PUBLIC CONTRIBUTION: Patient partners from the PriCARE research program were involved in the following aspects of the current study: 1) development of the research objectives; 2) planning of the research design; 3) development and validation of data collection tools (i.e. interview guides); 4) production of data (i.e. acted as interviewees); 5) validation of data analysis tools (code book); 6) analysis of qualitative data; and 7) drafting of the manuscript and contributing to other knowledge translation activities, such as conference presentations and the creation of a short animated video. This article is protected by copyright. All rights reserved.
    Keywords:  participatory action research; patient engagement; patient-oriented research.
    DOI:  https://doi.org/10.1111/hex.13542
  7. Cancer. 2022 May 17.
      BACKGROUND: Six multidisciplinary cancer centers were selected and funded by the Merck Foundation (2017-2021) to collaborate in the Alliance to Advance Patient-Centered Cancer Care ("Alliance"), an initiative to improve patient access, minimize health disparities, and enhance the quality of patient-centered cancer care. These sites share their insights on implementation and expansion of their patient navigation efforts.METHODS: Patient navigation represents an evidence-based health care intervention designed to enhance patient-centered care and care coordination. Investigators at 6 National Cancer Institute-designated cancer centers outline their approaches to reducing health care disparities and synthesize their efforts to ensure sustainability and successful transferability in the management of patients with cancer and their families in real-world health care settings.
    RESULTS: Insights are outlined within the context of patient navigation program effectiveness and supported by examples from Alliance cancer center sites: 1) understand the patient populations, particularly underserved and high-risk patients; 2) capitalize on the existing infrastructure and institutional commitment to support and sustain patient navigation; and 3) build capacity by mobilizing community support outside of the cancer center.
    CONCLUSIONS: This process-level article reflects the importance of collaboration and the usefulness of partnering with other cancer centers to share interdisciplinary insights while undergoing intervention development, implementation, and expansion. These collective insights may be useful to staff at other cancer centers that look to implement, enhance, or evaluate the effectiveness of their patient navigation interventions.
    Keywords:  cancer control continuum; cancer health disparities; implementation; patient navigation; sustainability
    DOI:  https://doi.org/10.1002/cncr.34251
  8. BMC Geriatr. 2022 May 16. 22(1): 428
      BACKGROUND: Despite healthcare providers' goal of patient-centeredness, current models for the ambulatory (i.e., outpatient) care of older people have not as yet systematically incorporated their views. Moreover, there is no systematic overview of the preferable features of ambulatory care from the perspective of people aged 80 and over. Therefore, the aim of this study was to summarize their specific wishes and preferences regarding ambulatory care from qualitative studies.METHODS: The study was based on qualitative studies identified in a prior systematic review. Firstly, the findings of the qualitative studies were meta-summarized, following Sandelowski and Barroso. Secondly, a list of preferred features of care from the perspective of older people was derived from the included studies' findings through inductive coding. Thirdly, the review findings were appraised using the GRADE-CERQual tool to determine the level of confidence in the qualitative evidence. The appraisal comprised four domains: methodological limitations, coherence, data adequacy, and data relevance. Two reviewers independently evaluated every review finding in each domain. The final appraisals were discussed and ultimately summarized for the respective review finding (high, moderate, low, or very low confidence).
    RESULTS: The 22 qualitative studies included in the systematic review were mainly conducted in Northern and Western Europe (n = 15). In total, the studies comprised a sample of 330 participants (n = 5 to n = 42) with a mean or median age of 80 and over. From the studies' findings, 23 preferred features of ambulatory care were identified. Eight features concerned care relationships (e.g., "Older people wish to receive personal attention"), and 15 features concerned healthcare structures (e.g., "Older want more time for their care"). The findings emphasized that older people wish to build strong relationships with their care providers. The majority of the review findings reached a moderate or high confidence appraisal.
    CONCLUSIONS: While the listed features of healthcare structures are common elements of care models for older people (e.g., Geriatric Care Model), aspects of care relationships are somewhat underrepresented or are not addressed explicitly at all. Future research should further explore the identified preferred features and their impact on patient and care outcomes.
    Keywords:  Aged, 80 and over; Ambulatory care; Patient preferences; Patient-centered care; Qualitative research; Systematic review
    DOI:  https://doi.org/10.1186/s12877-022-03006-6
  9. BMJ Open. 2022 May 19. 12(5): e058380
      OBJECTIVE: To develop and refine a programme theory that explains factors that influence decisions to take part in health research by people of diverse ethnic and cultural backgrounds.DESIGN: Realist review following a sequence of five steps: (a) scoping search and identification of programme theory; (b) evidence searching; (c) critical appraisal and data extraction; (d) organisation of evidence and (e) refinement of programme theory.
    ELIGIBILITY CRITERIA: Documents (including peer-reviewed articles, grey literature, websites, reports and conference papers) either full text, or a section of relevance to the overarching research question were included.
    DATA SOURCES: EMBASE, Medline, Web of Science, Psych Info, Google and Google Scholar were searched iteratively between May and August 2020. Search strategy was refined for each database providing a broad enough review for building of programme theory.
    ANALYSIS: Data from eligible documents was extracted to build understanding of the factors that influence decision-making. Data were mapped to create a data matrix according to context (C), mechanism (M), outcome (O), configurations (C) (CMOCs) for the process of informed consent, to aid interpretation and produce final programme theory.
    RESULTS: 566 documents were screened and 71 included. Final programme theory was underpinned by CMOCs on processes influencing decisions to take part in research. Key findings indicate the type of infrastructure required, for example, resources, services and policies, to support inclusion in health research, with a greater need to increase the social presence of researchers within communities, improve cultural competency of individuals and organisations, reduce the complexity of participant information, and provide additional resources to support adaptive processes and shared decision making.
    CONCLUSION: The review indicates the need for a more inclusive research infrastructure that facilitates diverse participation in health research through incorporating adaptive processes that support shared decision making within the informed consent process and in the conduct of research projects.
    Keywords:  Clinical trials; Health policy; MEDICAL ETHICS
    DOI:  https://doi.org/10.1136/bmjopen-2021-058380
  10. Health Soc Care Community. 2022 May 17.
      Concerns from the worldwide ageing population and evidence of poor-quality aged care services have highlighted the need to develop innovative models of aged care which are acceptable to older people, economically sustainable and are safe. Reablement is a relatively new model for aged care that aims to support older people's desires to age independently in their usual place of residence and decrease dependency on aged care services. This qualitative evidence synthesis aimed to explore the experiences of older people and their carers (formal and informal) towards a reablement model of community aged care to ensure services are considerate of older people's needs. A systematic search was conducted across six electronic databases (Medline, Scopus, CINAHL, PsycINFO, Cochrane Library and Google Scholar) from 1990 to September 2021. Qualitative research exploring older people and their carers' experiences and perceptions of the reablement model used in community aged care services were identified. Nineteen articles were included in the synthesis following the screening of 668 abstracts and 56 full texts. Included articles were subject to quality assessment, and the data were synthesised using thematic synthesis. Three analytical themes were generated from the thematic synthesis; (i) reablement is a shift in approach to aged care, (ii) difficulties in developing tangible and meaningful reablement goals, (iii) reablement improves health and well-being. Reablement is generally well-received by older people and their informal carers. However, poor engagement from older people did occur when they had a poor understanding of their role in reablement and when they had not been fully consulted regarding their reablement goals. Current and future reablement services for older people should focus on ensuring an awareness of the processes and principles of reablement and collaboration between practitioner, the older person and their carer when developing goals to increase engagement.
    Keywords:  aged care; carers; home care; qualitative; reablement; review; social care
    DOI:  https://doi.org/10.1111/hsc.13837
  11. J Nurs Manag. 2022 May 20.
      AIM: The purpose of this review was to evaluate the content, validity and reliability of patient-reported questionnaires on patient participation in patient safety.BACKGROUND: Patient participation in patient safety is one of the key strategies that are increasingly regarded as a critical intervention to improve the quality of safety care.
    EVALUATION: A systematic review was conducted according to PRISMA guidelines. The content, reliability and validity of patient-reported questionnaires on patient participation in patient safety were assessed.
    KEY ISSUES: Twenty-seven studies were included for data extraction and synthesis. The questionnaire contents most commonly used to describe patient participation in patient safety were 'attitudes and perceptions', 'experience', 'information and feedback' and 'willingness'. Internal consistency was evaluated for seventeen questionnaires, and test-retest reliability was tested for four questionnaires. Content validity was assessed among all included questionnaires, and structural validity was evaluated for twelve questionnaires.
    CONCLUSIONS: Future research targeting the different safety issues is still indispensable for developing patient-reported questionnaires with great psychometric quality in validity, reliability, feasibility and usability in patient participation in patient safety.
    IMPLICATIONS FOR NURSING MANAGEMENT: Clinical nurses should consider the internal consistency, test-retest reliability, content validity and structural validity of the questionnaires that have been positively appraised for methodological quality before use.
    Keywords:  patient participation; patient safety; questionnaire; systematic review
    DOI:  https://doi.org/10.1111/jonm.13690
  12. Res Theory Nurs Pract. 2022 Apr 01. 36(2): 139-155
      Background and Purpose: Interpersonal trust is trust between two people and is an important component of the nurse-patient relationship in the hospital setting. Interpersonal trust entails good will, familiarity, risk, power imbalance, and vulnerability. This grounded theory study was undertaken to explain how interpersonal trust develops with the nurse from the perspective of the hospitalized adults. Methods: Face-to-face interviews were conducted with 20 hospitalized adults in their private hospital room. Data analysis was conducted concurrently with data collection using constant comparison. Results: The resulting model had six categories within the core category Taking the Time which reflected nursing presence. The beginning phase had two categories reflecting the patient Feeling Vulnerable and Relying on the Nurse. The middle phase had three categories reflecting the nurse Having a Positive Vibe, Seeing Me as a Person and Caring About Me. The endpoint of developing trust was the patient Feeling Comfortable. Patients perceived the nurse as in control of trust development in the hospital setting. Implications for Practice: The nurse conveying a positive attitude was a principal facilitator to trust development. A barrier to trust development was the nurse seeing the patient as a checklist and not as a person. When trust was established, the patient was more willing to ask questions. When trust did not develop, the patient avoided the nurse and attempted to complete activities on their own such as ambulating to the bathroom. The nurse taking the time and establishing trust contributes to safe patient care.
    Keywords:  grounded theory; nurse-patient relations; nursing care; trust
    DOI:  https://doi.org/10.1891/RTNP-2021-0024
  13. Appl Nurs Res. 2022 Jun;pii: S0897-1897(22)00029-5. [Epub ahead of print]65 151587
      AIMS: Although medical professionals possess a positive attitude toward SDM, they lack of a complete understanding of conceptual shared decision making (SDM). Therefore, a related knowledge base must be constructed to enhance service education. We aimed to examine the effectiveness of an educational program with situational simulation video on nurses' SDM attitude.METHODS: A randomized controlled trial with single-blind study design was conducted, and permuted block randomization was employed. Participants were randomly assigned to an experimental group (n = 50) or control group (n = 50). Only the experimental group received education programs within 2 weeks, with the first covering the basic concept of SDM and the second comprising situation simulation teaching. In both groups, data were collected prior to intervention as baseline, immediately after intervention to evaluate its immediate effects, and 2 months after intervention to test the delay effect. A generalized estimating equation, subgroup analysis and descriptive statistics were used to analyse data.
    RESULTS: A significant main effect over time was discovered. Nevertheless, no significant group-time interaction was noted between the two groups after a 2-month interval. Subgroup analysis reveals that the SDM attitude scores in both the experimental and control groups increase for within group. The improvement of SDM attitude score in the experiment group was better than control group at follow test.
    CONCISIONS: The findings of this study might provide a reference for health care providers when designing service education courses to improve the execution strategies of SDM and thus the quality of care provided.
    Keywords:  Educational videos; Nurse; SDM; Scenario; Shared decision-making; Simulation
    DOI:  https://doi.org/10.1016/j.apnr.2022.151587
  14. Can J Diabetes. 2021 Nov 27. pii: S1499-2671(21)00466-4. [Epub ahead of print]
      OBJECTIVES: Our aim in this study was to assess the moderating role of patient-centred communication as a source of social support in the relationship between burden of diabetes and diabetes distress.METHODS: Individuals with type 2 diabetes (N=1,267) completed validated tools of diabetes distress and multiple aspects of patient-centred communication. A path approach was used to evaluate the moderating role of patient-centred communication in the relationship between diabetes burden, as indicated by prescription of insulin and presence of complications, and distress.
    RESULTS: Lower Hurried Communication, higher Elicited Concerns, higher Explained Results, greater Patient-centred Decision-making and Compassionate/Respectful were significantly associated with lower distress after controlling for burden. Hurried Communication, Explained Results and Patient-centred Decision-making moderated the relation between insulin and diabetes distress.
    CONCLUSIONS: Our findings support the stress-buffering hypothesis of patient-centred communication and imply that aspects of patient-centred communication may protect against diabetes-related distress.
    Keywords:  buffering effect; communication centrée sur le patient; diabetes burden; diabetes distress; diabète de type 2; détresse liée au diabète; effet tampon; fardeau du diabète; patient-centred communication; type 2 diabetes
    DOI:  https://doi.org/10.1016/j.jcjd.2021.11.007
  15. J Transp Health. 2021 Jun;pii: 101055. [Epub ahead of print]21
      Introduction: Safe, affordable, and convenient transportation may help older adults (age 65 and older) stay independent, access healthcare services, and maintain their quality of life. While older adults in the United States primarily rely on private automobiles, those who reduce or cease driving may require alternative forms of transportation. Ride share services show promise as an alternative mode of transportation for older adults, particularly for those who no longer drive.Methods: We employed a qualitative research design to explore barriers and facilitators of older adults' use of ride share services and compare findings to younger adults (age 18 to 64). We conducted 96 telephone interviews (68 older adults and 28 younger adults), and 10 in-person focus groups (56 older adults and 17 younger adults), including individuals who used a ride share service and those who never used a ride share service. We conducted qualitative data analysis to identify key themes and developed a conceptual framework to organize and describe findings.
    Results: The qualitative analysis revealed the most important facilitator of older adults' use of ride share services was the desire to remain independent, particularly among those with health conditions and special needs that prevented them from using other transportation. Other facilitators included driver assistance (door-to-door service), a polite and courteous driver, a clean vehicle, and prompt and dependable service. Barriers among older adults included safety concerns, affordability, technology, and a lack of ride share services in the community. Among younger adults, technology was a facilitator of use.
    Conclusion: Ride share services are a promising transportation option. Findings highlight a need to tailor these services to older adults' needs. Ride share services that are safe, reliable, and offer driver assistance and telephone scheduling have the potential to support older adults' health, mobility, and independence.
    Keywords:  Aging; Alternative transportation; Driving; Health; Mobility; Safety
    DOI:  https://doi.org/10.1016/j.jth.2021.101055
  16. J Health Commun. 2022 May 17. 1-9
      Physician-patient conflicts are detrimental to doctor-patient relationship and sustainable healthcare delivery. In China, the status quo of the doctor-patient relationship is in great tension. Based on the uncertainty reduction theory (URT), the present study examined the relationship between patient-centered communication (PCC) and medical conflict, as well as the roles of perceived patients' trust, doctors' empathy, and expertise from physicians' perspectives. In March 2020, 509 physicians in China were recruited to participate in an online survey. The results revealed that PCC was negatively associated with physician-patient conflicts and that patient trust mediated the relationship. Additionally, doctors' empathy moderated PCC on patient trust, while expertise positively predicted physician-patient conflicts. Theoretical and practical implications for improving doctor-patient relationships were discussed.
    DOI:  https://doi.org/10.1080/10810730.2022.2071505
  17. Digit Health. 2022 Jan-Dec;8:8 20552076221097784
      Background: The evidence of the impact of online health information-seeking (OHIS) on health outcomes has been conflicting. OHIS is increasingly recognised as a factor influencing health behaviour but the impact of OHIS on medication adherence remains unclear.Objectives: We conducted a systematic review and meta-analysis to examine the associations between OHIS and medication adherence.
    Methods: We searched Medline, Embase, Web of Science, Scopus, CINAHL and Psychology and Behavioural Science Collection for studies published up to December 2020. The inclusion criteria were studies that reported the associations of OHIS and medication adherence, quantitative design, reported primary data only, related to any health condition where medications are used and conducted on patients either in clinical or community settings. A meta-analysis was used to examine the association between OHIS and medication adherence.
    Results: A total of 17 studies involving 24,890 patients were included in this review. The study designs and results were mixed. In the meta-analysis, there was no significant association (n = 7, OR 1.356, 95% CI 0.793-2.322, p = 0.265), or correlation (n = 4, r = -0.085, 95% CI -0.572-0.446, p = 0.768) between OHIS and medication adherence. In the sub-group analysis of people living with HIV/AIDS, OHIS was associated with better medication adherence (OR 1.612, 95% CI 1.266-2.054, p < 0.001).
    Conclusions: The current evidence of an association between OHIS and medication adherence is inconclusive. This review highlights methodological issues on how to measure OHIS objectively and calls for in-depth exploration of how OHIS affects health decisions and behaviour.
    Keywords:  consumer health information; information-seeking behaviour; internet; medication adherence; online
    DOI:  https://doi.org/10.1177/20552076221097784
  18. Front Public Health. 2022 ;10 878703
      Introduction: The first line of action against cancer is primary and secondary prevention. Increased efforts are needed in countries where cancer mortality is high and the healthcare system is inefficient. Objectives: Our aim was to present a new solution to identify and fill gaps in health education services in accordance with the European Code Against Cancer (ECAC).Materials and Methods: This study was carried out in a rural population of 122 beneficiaries of health education workshops financed by the Polish Cancer League. A self-developed questionnaire was used. PQStat v1.6.8. was also applied.
    Results: Our respondents were mostly farmers (53.3%) and manual workers (16.4%). Most participants self-assessed their health knowledge as good (46.7%). While 42% of all respondents claimed to know the healthy eating pyramid, only 8.2% correctly recognised all of its principles and 23.8% realised the importance of limiting the consumption of red meat. The most commonly recognised cancer risk factor were genetics (72.1%), stimulants such as alcohol or tobacco (51.5%) and environmental pollution (45.1%). UV radiation was not commonly recognised as a risk factor by respondents despite high occupational exposure in this population. We found a high percentage of male smokers. As many as 64.8% of respondents had not been counselled on cancer prevention in their clinics. A family history of cancer (FHC) did not differentiate respondents' health knowledge, health behaviors, or frequency of receiving cancer prevention counselling. Health education and health promotion in the region were unsatisfactory.
    Conclusions: Primary health care (PHC) should become more involved in promoting cancer prevention knowledge. One way could be to encourage health professionals to promote the ECAC. Cancer prevention should target especially persons with FHC and focus on modifiable cancer risk factors. At the workshops we were able to adjust the strength of each ECAC recommendation to best fit the target audience. By diagnosing and targeting specific communities, we can draw the attention of PHC staff and decision-makers to local health promotion needs, which is a good starting point for improving the situation. However, larger scale projects are needed to help design specific solutions to support primary healthcare in promoting ECAC.
    Keywords:  European Code Against Cancer; cancer prevention; community-based participatory research; family health history; health education; health literacy; primary health care; risk factors
    DOI:  https://doi.org/10.3389/fpubh.2022.878703
  19. J Orthop Sports Phys Ther. 2022 May 16. 1-15
      SYNOPSIS: Involving patients as partners in research enables their concerns, perspectives, lived experiences, and priorities to be integrated into research. Involving patient partners improves research processes, outcomes, and translating findings into practice. Although musculoskeletal researchers consider it is important to involve patient partners, few projects involve them. Researchers who involve patient partners report that the contributions of patient partners are very valuable, and researchers perceive the process to be less challenging than expected. Musculoskeletal research is staring at a significant unrealised opportunity to enhance the quality and impact of research and reduce research waste-think what the field could achieve if researchers and patients worked better together. A culture change is needed so that involving patient partners in musculoskeletal research becomes standard practice, expected and supported by funders, journals, research institutions and researchers alike. J Orthop Sports Phys Ther, Epub 12 May 2022. doi:10.2519/jospt.2022.10986.
    Keywords:  Community-Based Participatory Research; Consumer research partner; Cross-sectional studies; Musculoskeletal diseases; Patient and Public Involvement; Patients as partners; Research Design
    DOI:  https://doi.org/10.2519/jospt.2022.10986
  20. Can J Diabetes. 2021 Oct 22. pii: S1499-2671(21)00417-2. [Epub ahead of print]
      Barbara Reigel's theory of self-care has been used to create a Self-Care of Heart Failure Index (SCHFI), which has been adapted by researchers into a Self-Care of Diabetes Inventory (SCODI) for individuals living with type 2 diabetes mellitus (T2DM). The SCODI measures how an individual is currently caring for their T2DM to identify areas in need of health-care provider support. The SCODI tool appears to have widespread international dissemination, but it is unknown how the SCODI or Reigel's concept of self-care are being utilized in the Canadian or American diabetes literature. In this critical review we seek to determine how the concept of self-care, including Reigel's concept of self-care, and the SCODI are being utilized in the Canadian and American diabetes literature for adults with T2DM. Critical review methodology was used to identify publications that had an adult T2DM population and self-care language. All included studies (n=11) were assessed using the Strengthening the Reporting of Observational Studies in Epidemiology statement and Joanna Briggs Institute critical appraisal checklist to determine methodologic quality. Included studies are of medium to high quality and are often not defining or measuring self-care. When studies are measuring self-care, they are utilizing the Summary of Diabetes Self-Care Activities (SDSCA) more often (46%) than the SCODI (18%). Future research should collaborate with the international community to set a clear definition of self-care and create a theory-driven approach to self-care for T2DM as well as consider understanding the differences and similarities of the SDSCA and SCODI tools.
    Keywords:  autosoins; critical review; diabète de type 2; revue critique; self-care; type 2 diabetes
    DOI:  https://doi.org/10.1016/j.jcjd.2021.10.004
  21. BMC Med Educ. 2022 May 16. 22(1): 374
      BACKGROUND: International migration, especially forced migration, highlights important medical training needs including cross-cultural communication, human rights, as well as global health competencies for physical and mental healthcare. This paper responds to the call for a 'trauma informed' refugee health curriculum framework from medical students and global health faculty.METHODS: We used a mixed-methods approach to develop a guiding medical undergraduate refugee and migrant health curriculum framework. We conducted a scoping review, key informant interviews with global health faculty with follow-up e-surveys, and then, integrated our results into a competency-based curriculum framework with values and principles, learning objectives and curriculum delivery methods and evaluation.
    RESULTS: The majority of our Canadian medical faculty respondents reported some refugee health learning objectives within their undergraduate medical curriculum. The most prevalent learning objective topics included access to care barriers, social determinants of health for refugees, cross-cultural communication skills, global health epidemiology, challenges and pitfalls of providing care and mental health. We proposed a curriculum framework that incorporates values and principles, competency-based learning objectives, curriculum delivery (i.e., community service learning), and evaluation methods.
    CONCLUSIONS: The results of this study informed the development of a curriculum framework that integrates cross-cultural communication skills, exploration of barriers towards accessing care for newcomers, and system approaches to improve refugee and migrant healthcare. Programs should also consider social determinants of health, community service learning and the development of links to community resettlement and refugee organizations.
    Keywords:  Cultural competence; Cultural safety; Disease prevention; Refugees and migrants; Social accountability; Undergraduate medical education framework
    DOI:  https://doi.org/10.1186/s12909-022-03413-8
  22. BMJ Open Qual. 2022 May;pii: e001695. [Epub ahead of print]11(2):
      BACKGROUND: Consistent and timely delivery of comprehensive preventative care services is a challenge, particularly in underserved patient populations. Previous quality improvement (QI) research has focused on the development of bundled measures of preventative services delivery, but these bundles have not been studied on a population level. We aimed to improve preventative care service delivery on a clinic population level through the use of a bundled measure that includes immunisations, lead screening and use of screening tools among underserved patients under 2 years old.METHODS: A QI study was conducted at a community-based academic primary care clinic. A population-level bundled measure was adapted from an existing tool. We used plan-do-study-act cycles to optimise results and tracked bundle outcome rates using a p-type statistical process control chart. Interventions included (1) staff education on measure components, (2) introduction of exam room-based phlebotomy to address lead screening completion rates and (3) population management strategies, including development of a patient registry and use of reminders and visit tracking to increase attendance at well-child visits.
    RESULTS: The percent of bundle completion by 14 months of age increased from a baseline of 58%-77% following implementation of the QI initiatives. A mean shift was identified after the population manager began proactive targeted outreach for the 12-month visit.
    CONCLUSION: Targeted systems for outreach aimed at bringing patients into the clinic and patient-centred strategies for visit completion are effective at ensuring timely delivery of comprehensive preventative care to an underserved paediatric population.
    Keywords:  PRIMARY CARE; Paediatrics; Quality improvement
    DOI:  https://doi.org/10.1136/bmjoq-2021-001695
  23. BMC Geriatr. 2022 May 17. 22(1): 433
      OBJECTIVES: The transition of an older family member into a residential aged care facility (RACF) is often challenging for both the person being admitted and their family carer. This review aimed to identify the protective and contributing factors to adverse mental health outcomes among family carers following the decision to move a family member to a RACF.METHOD: A search of CINAHL, PubMed and PsycINFO was conducted for empirical papers published in English between 2004 and 2019, exploring the mental health or quality of life (QoL) of family carers of those recently admitted, or considering admission, to a RACF. Articles were reviewed by two authors for inclusion.
    RESULTS: Twenty-three studies met the inclusion criteria. Pre-existing depressive symptoms and poor subjective health were related to adverse mental health outcomes following admission. Information from the facility, support to change roles, and factors related to carer's health and demographics, were associated with changes in the mental health outcomes of carers during the transition of their relative to a RACF. Key protective factors of carer's mental health outcomes following the transition of their relative to a RACF are flow and transparency of information between carer and the facility staff, and staff efforts to involve carers in providing emotional support to their relative, in monitoring care, and advocating for their quality of life.
    CONCLUSION: There is evidence to suggest factors such lack of flow and transparency of information between carer and the facility staff may predispose carers to poor mental health and QoL following the transition of a relative to a RACF. Key protective factors of carer's mental health following admission are staff efforts to involve carers in providing emotional support to their relative, in monitoring care, and advocating for their quality of life. This review also indicates that the combination of factors that puts family carers more at risk of poor mental health and lower quality of life throughout the transition period. Policy and practice should follow recommendations that consider a combination of the above factors when addressing the needs of family carers before and after admission of an older person to RACF.
    Keywords:  Family carers; Long-term care; Mental well-being; Nursing homes; Residential aged care; Review, risk factors
    DOI:  https://doi.org/10.1186/s12877-022-03105-4
  24. Asia Pac J Clin Oncol. 2022 May 19.
      AIM: To understand the opinions and current practices of health professionals on the topic of addressing cancer-related financial toxicity among patients.METHODS: A cross-sectional online survey was distributed through Australian clinical oncology professional organizations/networks. The multidisciplinary Clinical Oncology Society of Australia Financial Toxicity Working Group developed 25 questions relating to the frequency and comfort levels of patient-clinician discussions, opinions about their role, strategies used, and barriers to providing solutions for patients. Descriptive statistics were used and subgroup analyses were undertaken by occupational groups.
    RESULTS: Two hundred and seventy-seven health professionals completed the survey. The majority were female (n = 213, 77%), worked in public facilities (200, 72%), and treated patients with varied cancer types across all of Australia. Most participants agreed that it was appropriate in their clinical role to discuss financial concerns and 231 (88%) believed that these discussions were an important part of high-quality care. However, 73 (28%) stated that they did not have the appropriate information on support services or resources to facilitate such conversations, differing by occupation group; 7 (11%) social workers, 34 (44%) medical specialists, 18 (25%) nurses, and 14 (27%) of other occupations. Hindrances to discussing financial concerns were insufficient resources or support systems to refer to, followed by lack of time in a typical consultation.
    CONCLUSION: Health professionals in cancer care commonly address the financial concerns of their patients but attitudes differed across occupations about their role, and frustrations were raised about available solutions. Resources supporting financial-related discussions for all health professionals are urgently needed to advance action in this field.
    Keywords:  cancer; communication; financial toxicity; health professionals; healthcare workers; support services
    DOI:  https://doi.org/10.1111/ajco.13786
  25. Res Involv Engagem. 2022 May 16. 8(1): 20
      BACKGROUND: 'Getting Involved in Research' was co-created and delivered by a multi-organisational group to provide an accessible introduction to research for those with lived experience of health and social care services.METHOD: The evaluation of participants' perceptions adopted an exploratory mixed method research design and aimed to gather data to provide an in-depth understanding of the participants' experience of 'Getting Involved in Research' through the co-researchers' analysis of qualitative data using Participatory Theme Elicitation (PTE). PTE was used with the qualitative data to promote co-analysis by the course development group; analyses from an independent academic was also used to further validate the method of PTE.
    RESULTS: Thirty-five participants in total participated in 'Getting Involved in Research'. Age ranges varied from 19 to 73 years old. Participants were predominately female (n = 24), five males participated (n = 5) and there was one participant who identified as non-binary (n = 1). Six core themes were identified using the PTE approach: (1) A Meaningful Participatory Approach (2) Increasing the Confidence of Participants (3) Interactive Online Format (4) An Ambient Learning Environment (5) A Desire for Future Courses (6) A Balance of Course Content and Discussion. Participants in 'Getting Involved in Research' reported that the content of the training was applicable, relevant, fostered awareness of research methods and anticipated that it would support their involvement in research.
    CONCLUSION: 'Getting Involved in Research' has contributed innovatively to the evidence base for how to engage with and motivate those who have experience of health and social care to become actively involved in research. This study demonstrates that 'Getting Involved in Research' may be helpful to train those with lived experience and their care partners however, further research following up on the application of the course learning would be required to ascertain effectiveness.
    FUTURE DIRECTIONS: Future research should explore methods to apply research skills in practice to further develop participants' confidence in using the skills gained through 'Getting Involved in Research'.
    Keywords:  Health and social care education; Lived experience; Participatory research; Participatory theme elicitation (PTE); Patient and public Involvement (PPI); Service users
    DOI:  https://doi.org/10.1186/s40900-022-00353-x
  26. BMC Med Educ. 2022 May 19. 22(1): 382
      BACKGROUND: YouTube is a valuable source of health-related educational material which can have a profound impact on people's behaviors and decisions. However, YouTube contains a wide variety of unverified content that may promote unhealthy behaviors and activities. We aim in this systematic review to provide insight into the published literature concerning the quality of health information and educational videos found on YouTube.METHODS: We searched Google Scholar, Medline (through PubMed), EMBASE, Scopus, Direct Science, Web of Science, and ProQuest databases to find all papers on the analysis of medical and health-related content published in English up to August 2020. Based on eligibility criteria, 202 papers were included in our study. We reviewed every article and extracted relevant data such as the number of videos and assessors, the number and type of quality categories, and the recommendations made by the authors. The extracted data from the papers were aggregated using different methods to compile the results.
    RESULTS: The total number of videos assessed in the selected articles is 22,300 (median = 94, interquartile range = 50.5-133). The videos were evaluated by one or multiple assessors (median = 2, interquartile range = 1-3). The video quality was assessed by scoring, categorization, or based on creators' bias. Researchers commonly employed scoring systems that are either standardized (e.g., GQS, DISCERN, and JAMA) or based upon the guidelines and recommendations of professional associations. Results from the aggregation of scoring or categorization data indicate that health-related content on YouTube is of average to below-average quality. The compiled results from bias-based classification show that only 32% of the videos appear neutral toward the health content. Furthermore, the majority of the studies confirmed either negative or no correlation between the quality and popularity of the assessed videos.
    CONCLUSIONS: YouTube is not a reliable source of medical and health-related information. YouTube's popularity-driven metrics such as the number of views and likes should not be considered quality indicators. YouTube should improve its ranking and recommender system to promote higher-quality content. One way is to consider expert reviews of medical and health-related videos and to include their assessment data in the ranking algorithm.
    Keywords:  Bias; Health information; Medical videos; Quality assessment; YouTube
    DOI:  https://doi.org/10.1186/s12909-022-03446-z
  27. Aust Health Rev. 2022 May 17.
      ObjectiveTo examine the characteristics and circumstances of admitted patients with disability who require individualised supports to leave hospital and who experience interim discharge arrangements.MethodsThe study used a retrospective exploratory design. Medical chart reviews of patients with disability who required funded support to leave hospital were conducted. The records of 224 patients admitted to one of three hospital facilities in South-East Queensland, Australia, between May 2017 and January 2020 were reviewed. Information about hospital facility, demographic characteristics, disability type, support needs, discharge destination, and reasons for interim discharges were extracted for analysis.ResultsForty of 224 patients were discharged to an interim destination. Inter-hospital transfers were the most common interim discharge arrangement. Being divorced or separated was the only demographic variable associated with having an interim discharge arrangement for admitted patients with disability. More patients with disability who experienced an interim discharge required accommodation supports and behavioural supports compared to patients who were not involved in interim discharges.ConclusionsPatients with disability with minimal informal support and who rely on a sophisticated mix of individualised supports to leave hospital may be more susceptible to interim discharge arrangements. Early identification of these patients and formal mechanisms for ensuring continuous coordination of ongoing transitions and supports is critical to avoid sub-optimal outcomes. Future research is needed to capture a complete picture of the series of transitions of interim discharged patients with disability leaving acute care facilities and the quality of their supports and outcomes.
    DOI:  https://doi.org/10.1071/AH21398