bims-paceca Biomed News
on Patient-centred care
Issue of 2022–10–09
seven papers selected by
Rob Penfold, Queensland Health



  1. JCO Clin Cancer Inform. 2022 Sep;6 e2200005
      Given the impact of health literacy (HL) on patients' outcomes, limited health literacy is a major barrier to improve cancer care globally. HL refers to the degree in which an individual is able to acquire, process, and comprehend information in a way to be actively involved in their health decisions. Previous research found that almost half of the population in developed countries have difficulties in understanding health-related information. With the gradual shift toward the shared decision making process and digital transformation in oncology, the need for addressing low HL issues is crucial. Decision making in oncology is often accompanied by considerable consequences on patients' lives, which requires patients to understand complex information and be able to compare treatment methods by considering their own values. How health information is perceived by patients is influenced by various factors including patients' characteristics and the way information is presented to patients. Currently, identifying patients with low HL and simple data visualizations are the best practice to help patients and clinicians in dealing with limited health literacy. Furthermore, using eHealth, as well as involving HL mediators, supports patients to make sense of complex information.
    DOI:  https://doi.org/10.1200/CCI.22.00005
  2. J Eval Clin Pract. 2022 Oct 02.
       RATIONALE: Shared decision making has been widely advocated and evaluated in diverse ways for 4 decades.
    AIMS AND OBJECTIVES: But there is scant evidence that it is commonly accepted by or has influence on practitioners' behaviour or that it positively affects patient health outcomes. This situation may be due in part to the absence of a commonly agreed operational definition of the construct. This is admitted in the literature and has led to multiple approaches to evaluation.
    METHOD: An operational definition is proposed based on ethical parity among parties, sharing of mutually interacting expectations and analysis of decisions as commitment to action rather than information.
    RESULTS: Shared decision making occurs when two autonomous and uncoerced agents both commit to actions that neither has reason to want to change based on their understanding of anticipated outcomes given the situation at hand and of the intended actions of the other party.
    CONCLUSION: It is a broader concept than providing information regarding treatment alternatives in the office.
    Keywords:  evaluation; operational definition; shared decision making
    DOI:  https://doi.org/10.1111/jep.13773
  3. Health Expect. 2022 Oct 03.
       INTRODUCTION: Growing numbers of older patients occupy hospital beds despite being 'medically fit' for discharge. These Delayed Transfers of Care amplify inefficiencies in care and can cause harm. Delayed transfer because of family or patient choice is common; yet, research on patient and family perspectives is scarce. To identify barriers to, and facilitators of, shorter hospital stays, we sought to understand older people's and caregivers' thoughts and feelings about the benefits and harms of being in hospital and the decisions made at discharge.
    METHODS: A multimethod qualitative study was carried out. Content analysis was carried out of older people's experiences of health or care services submitted to the Care Opinion online website, followed by telephone and video interviews with older people and family members of older people experiencing a hospital stay in the previous 12 months.
    RESULTS: Online accounts provide insight into how care was organized for older people in the hospital, including deficiencies in care organization, the discharge process and communication, as well as how care was experienced by older people and family members. Interview-generated themes included shared meanings of hospitalization and discharge experiences and the context of discharge decisions including failure in communication systems, unwarranted variation and lack of confidence in care and lack of preparation for ongoing care.
    CONCLUSION: Poor quality and availability of information, and poor communication, inhibit effective transfer of care. Communication is fundamental to patient-centred care and even more important in discharge models characterized by limited assessments and quicker discharge. Interventions at the service level and targeted patient information about what to expect in discharge assessments and after discharge could help to address poor communication and support for improving discharge of older people from hospital.
    PATIENT OR PUBLIC CONTRIBUTION: The Frailty Oversight Group, a small group of older people providing oversight of the Community Aging Research 75+ study, provided feedback on the research topic and level of interest, the draft data collection tools and the feasibility of collecting data with older people during the COVID-19 pandemic. The group also reviewed preliminary findings and provided feedback on our interpretation.
    Keywords:  discharge to assess; hospital discharge; hospital stay; older people; transfer of care
    DOI:  https://doi.org/10.1111/hex.13588
  4. Pancreas. 2022 Jul 01. 51(6): 628-633
       OBJECTIVES: Patient education and resources that address barriers to health literacy to improve understanding in pancreatic cancer are limited. We evaluated the impact and outcomes benefits of Animated Pancreas Patient (APP) cancer educational modules (APP website and YouTube).
    METHODS: A retrospective study of APP metrics and utilization data from September 2013 to February 2021 was conducted. We evaluated audience reach and calculated top views by media type (animation/expert video/patient video/slideshow) and top retention videos from the modules.
    RESULTS: During the study period, APP had 4,551,079 views worldwide of which 2,757,064 unique visitors or 60% were from the United States. Of these, 54% were patients, 17% were family members or caregivers, 16% were health care providers, and 13% were other. The most popular topic viewed among the animations was "Understanding Clinical Trials" (n = 182,217), and the most common expert video viewed was "What are the different stages of pancreatic cancer?" (n = 15,357).
    CONCLUSIONS: Pancreatic cancer patient education using APP's visual formats of learning demonstrated a wide reach and had a significant impact on improved understanding among patients, families, and caregivers. Continued efforts should be made to provide patient resources that address health literacy, better quality of life and improved health outcomes in pancreatic cancer.
    DOI:  https://doi.org/10.1097/MPA.0000000000002087
  5. Prev Med Rep. 2022 Dec;30 101994
      Patients at high risk for cardiovascular disease (CVD) tend to receive less intensive preventive care. Clinical practice guidelines recommend shared decision making (SDM) to improve the quality of primary CVD prevention. There are tools for use during the clinical encounter that promote SDM, but, to our knowledge, there are no SDM encounter tools that support conversations about available lifestyle and pharmacological options that can lead to preventive care that is congruent with patient goals and CVD risk. Using the best available evidence and human-centered design (iterative design in the context of ultimate use with users), our team developed a SDM encounter tool, CV Prevention Choice. Each subsequent version during the iterative development process was evaluated in terms of content, usefulness, and usability by testing it in real preventive encounters. The final version of the tool includes a calculator that estimates the patient's risk of a major atherosclerotic CVD event in the next 10 years. Lifestyle and medication options are presented, alongside their pros, cons, costs, and other burdens. The risk reduction achieved by the selected prevention program is then displayed to support collaborative deliberation and decision making. A U.S. multicenter trial is estimating the effectiveness of CV Prevention Choice in achieving risk-concordant CV prevention while identifying the best strategies for increasing the adoption of the SDM encounter tool and its routine use in practice.
    Keywords:  Cardiovascular disease prevention; Decision aids; Encounter tools; Shared decision making
    DOI:  https://doi.org/10.1016/j.pmedr.2022.101994
  6. Kidney Med. 2022 Oct;4(10): 100540
       Rationale & Objective: To what degree and how patient navigators improve clinical outcomes for patients with chronic kidney disease (CKD) and kidney failure is uncertain. We performed a systematic review to summarize patient navigator program design, evidence, and implementation in kidney disease.
    Study Design: A search strategy was developed for randomized controlled trials and observational studies that evaluated the impact of navigators on outcomes in the setting of CKD and kidney failure. Articles were identified from various databases. Two reviewers independently screened the articles and identified those meeting the inclusion criteria.
    Setting & Participants: Patients with CKD or kidney failure (in-center hemodialysis, peritoneal dialysis, home hemodialysis, or kidney transplantation).
    Selection Criteria for Studies: Studies that compared patient navigators with a control, without limits on size, duration, setting, or language. Studies focusing solely on patient education were excluded.
    Data Extraction: Data were abstracted from full texts and risk of bias was assessed.
    Analytical Approach: No meta-analysis was performed.
    Results: Of 3,371 citations, 17 articles met the inclusion criteria including 14 original studies. Navigators came from various healthcare backgrounds including nursing (n=6), social worker (n=2), medical interpreter (n=1), research (n=1), and also included kidney transplant recipients (n=2) and non-medical individuals (n=2). Navigators focused mostly on education (n=9) and support (n = 6). Navigators were used for patients with CKD (n=5), peritoneal dialysis (n=2), in-center hemodialysis (n=4), kidney transplantation (n=2), but not home hemodialysis. Navigators improved transplant workup and listing, peritoneal dialysis utilization, and patient knowledge.
    Limitations: Many studies did not show benefits across other outcomes, were at a high risk of bias, and none reported cost-effectiveness or patient-reported experience measures.
    Conclusions: Navigators improve some health outcomes for CKD but there was heterogeneity in their structure and function. High-quality randomized controlled trials are needed to evaluate navigator program efficacy and cost-effectiveness.
    Keywords:  Chronic kidney disease; dialysis; kidney failure; patient navigator; systematic review
    DOI:  https://doi.org/10.1016/j.xkme.2022.100540
  7. Clin Teach. 2022 Oct 05. e13544
       BACKGROUND: Whilst it is widely acknowledged that health care professionals (HCPs) learn from patient encounters, research exploring what HCPs learn from their meetings with patients is relatively sparse, particularly in the context of postgraduate training. Moreover, there are few research studies that examine the contribution of patient encounters to HCP education from both HCP and patient perspectives. This study set out to explore HCPs learning from patient encounters from both HCP and patient perspectives.
    METHODS: Qualitative descriptive design was used to conduct this study. Using purposive sampling, we recruited participants from three different groups in a single department of paediatrics in a teaching hospital. Data was collected through interviews, which were transcribed and analysed for key themes.
    FINDINGS: Patients felt that they played a central role in clinical education and highlighted their ability to educate postgraduate HCPs about their lived experiences of disease. HCPs highlighted the unique insight into a chronic illness gained from patient accounts, essential to developing patient and family orientated approaches to care. HCPs reported that they developed professionally, learning to adapt their negotiation and educational strategies.
    CONCLUSIONS: This study highlights the importance of patient encounters as critical contributors to HCPs understanding of the lived experiences of patients with chronic disease, and offers insights into how parents view their contribution to clinical education. Much of this learning is embedded and implicit, which suggests that HCP trainees need to develop better in the moment awareness of what they are learning from their meetings with patients and their families.
    DOI:  https://doi.org/10.1111/tct.13544