bims-paceca 2022-04-10 papers

bims-paceca

Biomed News

on Patient-centred care

Issue of 2022‒04‒10
23 papers selected by
Rob Penfold
Queensland Health

"Let Me Show You How I Think About This Problem…": Impactful Nuances of Shared Medical Decision-Making.
Shared decision making between older people with multimorbidity and GPs: a qualitative study.
Health Literacy and Patient Participation in Shared Decision-Making in Orthopedic Surgery.
Key Factors Relevant for Healthcare Decisions of Patients with Type 1 and Type 2 Diabetes in Secondary Care According to Healthcare Professionals.
How to Improve Interpretability of Patient-Reported Outcome Measures for Clinical Use: A Perspective on Measuring Abilities and Feelings.
Family involvement in medical decision making in Europe and the United States: A replication and extension in five Countries.
National Implementation of an Electronic Patient-Reported Outcome Measures Program for Joint Replacement Surgery: Pilot Study.
A Decision Shared Is a Decision Halved.
Interrupted opening statements in clinical encounters: A scoping review.
Can modifications to how medical imaging findings are reported improve quality of care? A systematic review.
Presenting cases in front of patients: implications for a key medical education genre.
Characteristics and Effectiveness of Dedicated Care Programs for Patients Starting Dialysis: A Systematic Review.
Describing workplace interventions aimed to improve health of staff in hospital settings - a systematic review.
Men's help-seeking and engagement with general practice: An integrative review.
The patient as a prosumer of healthcare: insights from a bibliometric-interpretive review.
Bringing PROMIS to Early Childhood: Introduction and Qualitative Methods for the Development of Early Childhood Parent Report Instruments.
Effectiveness of registered nurses on system outcomes in primary care: a systematic review.
Pathways Project: Development of a Multimodal Innovation To Improve Kidney Supportive Care in Dialysis Centers.
Patient-reported outcomes and patient voices.
A general practice intervention for people at risk of poor health outcomes: the Flinders QUEST cluster randomised controlled trial and economic evaluation.
Kidney Health For All: Bridging the Gap in Kidney Health Education and Literacy.
How patient centric is health policy development? The case of the Parliamentary Inquiry into Sleep Health Awareness in Australia.
Effectiveness and Cost-effectiveness of an Empowerment-Based Self-care Education Program on Health Outcomes Among Patients With Heart Failure: A Randomized Clinical Trial.

J Patient Exp. 2022 ;9 23743735221089699

"Let Me Show You How I Think About This Problem…": Impactful Nuances of Shared Medical Decision-Making.

Armaun D Rouhi, Jeffrey H Millstein.

  Shared decision-making is a key component of patient-centered care. In this clinical vignette, we illustrate the value of bringing patients into the clinical thought process as part of shared decision-making.

Keywords:  clinician–patient relationship; medical decision-making; patient engagement; patient perspectives/narratives

DOI:  https://doi.org/10.1177/23743735221089699
Br J Gen Pract. 2022 Feb 16. pii: BJGP.2021.0529. [Epub ahead of print]

Shared decision making between older people with multimorbidity and GPs: a qualitative study.

Emily L Brown, Leon Poltawski, Emma Pitchforth, Suzanne H Richards, John L Campbell, Joanne E Butterworth.

  BACKGROUND: Shared decision making (SDM), utilising the expertise of both patient and clinician, is a key feature of good-quality patient care. Multimorbidity can complicate SDM, yet few studies have explored this dynamic for older patients with multimorbidity in general practice.AIM: To explore factors influencing SDM from the perspectives of older patients with multimorbidity and GPs, to inform improvements in personalised care.
DESIGN AND SETTING: Qualitative study. General practices (rural and urban) in Devon, England.
METHOD: Four focus groups: two with patients (aged ≥65 years with multimorbidity) and two with GPs. Data were coded inductively by applying thematic analysis.
RESULTS: Patient acknowledgement of clinician medicolegal vulnerability in the context of multimorbidity, and their recognition of this as a barrier to SDM, is a new finding. Medicolegal vulnerability was a unifying theme for other reported barriers to SDM. These included expectations for GPs to follow clinical guidelines, challenges encountered in applying guidelines and in communicating clinical uncertainty, and limited clinician self-efficacy for SDM. Increasing consultation duration and improving continuity were viewed as facilitators.
CONCLUSION: Clinician perceptions of medicolegal vulnerability are recognised by both patients and GPs as a barrier to SDM and should be addressed to optimise delivery of personalised care. Greater awareness of multimorbidity guidelines is needed. Educating clinicians in the communication of uncertainty should be a core component of SDM training. The incorrect perception that most clinicians already effectively facilitate SDM should be addressed to improve the uptake of personalised care interventions.

Keywords:  aged; general practice; multimorbidity; qualitative research; shared decision making

DOI:  https://doi.org/10.3399/BJGP.2021.0529
Orthopedics. 2022 Apr 06. 1-6

Health Literacy and Patient Participation in Shared Decision-Making in Orthopedic Surgery.

Kevin Mertz, Sara Eppler, Romil Fenil Shah, Jeffrey Yao, Robert Steffner, Marc Safran, Serena Hu, Loretta Chou, Derek F Amanatullah, Robin N Kamal.

The influence of health literacy on involvement in decision-making in orthopedic surgery has not been analyzed and could inform processes to engage patients. The goal of this study was to determine the relationship between health literacy and the patient's preferred involvement in decision-making. We conducted a cross-sectional observational study of patients presenting to a multispecialty orthopedic clinic. Patients completed the Literacy in Musculoskeletal Problems (LiMP) survey to evaluate their health literacy and the Control Preferences Scale (CPS) survey to evaluate their preferred level of involvement in decision-making. Statistical analysis was performed with Pearson's correlation and multivariable logistic regression. Thirty-seven percent of patients had limited health literacy (LiMP score <6). Forty-eight percent of patients preferred to share decision-making with their physician equally (CPS score=3), whereas 38% preferred to have a more active role in decision-making (CPS score≤2). There was no statistically significant correlation between health literacy and patient preference for involvement in decision-making (r=0.130; P=.150). Among patients with orthopedic conditions, there is no significant relationship between health literacy and preferred involvement in decision-making. Results from studies in other specialties that suggest that limited health literacy is associated with a preference for less involvement in decision-making are not generalizable to orthopedic surgery. Efforts to engage patients to be informed and participatory in decision-making through the use of decision aids and preference elicitation tools should be directed toward variation in preference for involvement in decision-making, but not toward patient health literacy. [Orthopedics. 202x;xx(x):xx-xx.].

DOI: https://doi.org/10.3928/01477447-20220401-04
Patient Prefer Adherence. 2022 ;16 809-819

Key Factors Relevant for Healthcare Decisions of Patients with Type 1 and Type 2 Diabetes in Secondary Care According to Healthcare Professionals.

Merel M Ruissen, Jacob K Sont, Heidi A van Vugt, Marleen Kunneman, Guy E H M Rutten, Eelco J P de Koning.

  Purpose: Understanding which factors are important for healthcare decisions of patients with diabetes in clinical practice is important to personalise diabetes care strategies and tailor care plans to the individual. The main drivers for these healthcare decisions remain unclear. This study assessed which key factors are relevant for healthcare decisions during clinical consultations for patients with type 1 diabetes (T1DM) and type 2 diabetes (T2DM), according to healthcare professionals.Materials and Methods: Annual diabetes reviews were performed as part of a trial assessing the impact of a consultation model facilitating person-centred diabetes care in six hospital outpatient clinics. After each consultation, we asked healthcare professionals to choose a maximum of three out of 20 factors that were most relevant for healthcare decisions about treatment goals and the professional support needed during the upcoming year. Factors were characterised as either person or disease-related. Percentages reflect the number of annual diabetes reviews in which the key factor was reported.
Results: Seventeen physicians and eight diabetes specialist nurses reported the key factors relevant for healthcare decisions in 285 annual diabetes reviews (T1DM n = 119, T2DM n = 166). Healthcare professionals most often reported quality of life (31.9%), motivation (27.0%) and diabetes self-management (25.6%), and to a lesser extent glycaemic control (24.2%), to be important for decisions about treatment goals. For decisions about the professional support needed during the upcoming year patient's preferences (33.7%), diabetes self-management (33.3%), quality of life (27.0%) and motivation (25.6%) were most often considered relevant by healthcare professionals.
Conclusion: According to healthcare professionals, person-related factors such as quality of life, diabetes self-management and motivation are predominantly relevant for healthcare decisions about treatment goals and the professional support needed during the upcoming year.

Keywords:  diabetes mellitus; person-centred; preferences; shared decision making

DOI:  https://doi.org/10.2147/PPA.S354686
Patient Relat Outcome Meas. 2022 ;13 69-77

How to Improve Interpretability of Patient-Reported Outcome Measures for Clinical Use: A Perspective on Measuring Abilities and Feelings.

Jacek A Kopec.

  Two general classes of concepts measured by patient-reported outcome measures (PROMs) are abilities and feelings. Over the past several decades, there has been a significant progress in measuring both. Nevertheless, current multi-item scales are subject to criticism related to scale length, score dimensionality, interpretability, cultural bias, and insufficient detail in measuring specific domains. To address some of these issues, the author offers an alternative perspective on how questions about abilities and feelings could be formulated. Abilities can be defined in terms of a relationship between the level of performance and the associated perception of difficulty, and represented graphically by an ability curve. For feelings, it may be useful to measure frequency and intensity jointly to determine the proportion of time in each level of intensity. The resultant frequency × intensity matrix can be presented as a bar graph. Empirical data to support the feasibility and validity of these approaches to PROM design are provided, potential advantages and limitations are discussed, and some future research avenues are suggested.

Keywords:  PROMs; abilities; feelings; measurement; patient-reported outcome measures; quality of life

DOI:  https://doi.org/10.2147/PROM.S355679
Soc Sci Med. 2022 Mar 26. pii: S0277-9536(22)00238-6. [Epub ahead of print]301 114932

Family involvement in medical decision making in Europe and the United States: A replication and extension in five Countries.

Sebastian Scherr, Doreen Reifegerste, Florian Arendt, Julia C M van Weert, Dana L Alden.

  BACKGROUND: In 2018, Alden et al. showed that the desired degree of family involvement in medical decisions is an individual preference that is largely independent from East-West cultural stereotypes. At the same time, individual-level interdependence influenced whether patients preferred more individual or more family involvement in their decision making together with their medical care provider. The present study provides empirical evidence and adds evidence for Europe for which no such data previously existed.METHODS: The present study is a direct replication and extension of the original Alden et al. (2018) study (N = 2031; Australia, China, Malaysia, India, South Korea, Thailand, United States [U.S.]), however, using survey data from four European countries (Austria, Belgium, Germany, Netherlands) and the United States (U.S.) with a total sample size of N = 2750.
RESULTS: Random effects within-between models replicated the original primary finding that those with higher self-involvement in medical decision making preferred less family involvement. Furthermore, patients with lower self-independence, higher relational interdependence, and stronger beliefs in social hierarchy are more likely to want their families involved in medical decisions besides their health care provider.
CONCLUSIONS: These observed relationships are largely consistent both within and across the four European countries and the U.S. In conclusion, the results point to the importance of avoiding cultural stereotypes and instead, recognizing that patient desires for family involvement in medical decision making vary dramatically within cultures depending on multiple individual differences. Furthermore, a growing body of evidence suggests that these antecedents of family involvement as well as the construct itself may be measurable in diverse cultures with high levels of confidence in their reliability and validity.

Keywords:  Cross-cultural replication; Europe; Family involvement; Relational interdependence; Self-independence; Self-involvement; Shared decision making; United States (U.S.)

DOI:  https://doi.org/10.1016/j.socscimed.2022.114932
JMIR Form Res. 2022 Apr 08. 6(4): e30245

National Implementation of an Electronic Patient-Reported Outcome Measures Program for Joint Replacement Surgery: Pilot Study.

Emma L Heath, Ilana Ackerman, Michelle Lorimer, Sophia Rainbird, Grace O'Donohue, Andrew Brock, Stephen Graves, Ian Harris.

  BACKGROUND: There is a global emphasis on expanding data collection for joint replacement procedures beyond implant attributes and progression to revision surgery. Patient-reported outcome measures (PROMs) are increasingly considered as an important measure of surgical outcomes from a patient's perspective. However, a major limitation preventing wider use of PROMs data in national data collection has been the inability to systematically collect and share electronic information with relevant stakeholders in a comprehensive and financially sustainable manner.OBJECTIVE: This study reports on the development of an electronic data capture and reporting system by a national registry for the collection of PROMs and the processes used to identify and overcome barriers to implementation and uptake. The study also aims to provide a cost breakdown of establishing and maintaining a nationwide electronic PROMs program.
METHODS: Between 2018 and 2020, 3 governance and advisory committees were established to develop and implement a PROMs pilot program nested within a nationwide joint replacement registry. The program involved electronic collection of preoperative and 6-month postoperative data for hip, knee, or shoulder replacement surgery from 44 Australian hospitals. Resource requirements for the program included a project manager, software developers, data manager, and statistician. An online platform was tested, refined, and implemented for electronic PROMs collection with scalability considered for future expansion to all Australian hospitals and additional data fields. Technical capabilities included different access for multiple user types, patient registration, automatic reminders via SMS text messages and email, online consent, and patient outcome real-time dashboards accessible for different user groups (surgeons, patients, hospitals, and project stakeholders).
RESULTS: During the PROMs pilot period there were 19,699 primary procedures undertaken with 10,204 registered procedures in the electronic system. This equated to 51.80% of people who had a joint replacement at participating hospitals during this period. Patient registration and data collection were efficient (20-30 seconds and 10-12 minutes, respectively). Engagement with the reporting dashboards (as a proportion of those who viewed their dashboard) varied by user group: 197/277 (71.1%) hospital administrators, 68/129 (52.7%) project stakeholders, 177/391 (45.3%) surgeons, and 1138/8840 patients (12.9%). Cost analysis determined an overall cost per patient of Aus $7-15 (approximately US $5-12) for 2 PROMs collections per joint replacement procedure once the program was established.
CONCLUSIONS: Successful implementation of an orthopedic PROMs program with planned scalability for a broader national rollout requires significant funding and staffing resources. However, this expenditure can be considered worthwhile, given that collection and reporting of PROMs can drive health care improvement processes. Further consideration of strategies to improve stakeholder engagement with electronic reporting dashboards (particularly for patients and surgeons) will be critical to the ongoing success of a national PROMs program.

Keywords:  PROM; PROMs; capture; cost; cost-benefit; data capture; data collection; data reporting; electronic data; electronic data collection; joint replacement; online platform; operation; outcome measure; patient report; patient-reported outcome measure; postoperative; registry; registry science; surgery; surgical

DOI:  https://doi.org/10.2196/30245
JAMA Oncol. 2022 Apr 07.

A Decision Shared Is a Decision Halved.

Edward R Scheffer Cliff.

DOI: https://doi.org/10.1001/jamaoncol.2022.0153
Patient Educ Couns. 2022 Mar 31. pii: S0738-3991(22)00140-9. [Epub ahead of print]

Interrupted opening statements in clinical encounters: A scoping review.

Amanda C Coyle, Renata W Yen, Glyn Elwyn.

  OBJECTIVE: To conduct a scoping review of literature on the duration of patients' opening statements in clinical encounters, with or without an interruption.METHODS: We conducted a scoping review to identify articles based on pre-specified inclusion and exclusion criteria. One reviewer extracted study details and outcomes related to the length of patients' opening statements. A second reviewer verified this data.
RESULTS: We included 14 studies from 1185 citations reviewed. Encounters were in primary care clinics, specialty clinics, and hospitals. Across six studies, the mean time to interruption was 18.2 s. The mean length of uninterrupted opening statements was 45.9 s across nine studies.
CONCLUSION: Clinicians interrupting their patients' opening statements, compared to not interrupting, takes away time from the patient to fully present their concerns. Research has not focused on the nature of clinician interruptions. For instance, an interruption encouraging expansion or more detail facilitates understanding. Therefore, the impact these interruptions have on the clinical encounter remains unknown.
PRACTICE IMPLICATIONS: Interrupting the average patient does not save time, so clinicians may benefit from allowing their patients to complete their opening statements.

Keywords:  Communication barriers; Interruption; Opening statement; Physician-patient relations; Verbal behavior

DOI:  https://doi.org/10.1016/j.pec.2022.03.026
Clin Radiol. 2022 Mar 30. pii: S0009-9260(22)00119-2. [Epub ahead of print]

Can modifications to how medical imaging findings are reported improve quality of care? A systematic review.

C Farmer, A Bourne, R Haas, J Wallis, D O'Connor, R Buchbinder.

AIM: To synthesise the available evidence about the effects of modifications to diagnostic imaging reports that aim to optimise patient care.MATERIALS AND METHODS: Cochrane methods were used and CENTRAL, MEDLINE, EMBASE, and clinical trials registers were searched from inception to 31 March 2021. Randomised controlled trials of modifications to imaging reports aimed at optimising patient care for any condition were included. Two authors selected studies independently for inclusion, extracted data, assessed risk of bias, and judged certainty of evidence using GRADE. The primary outcome was quality of care (e.g., increased guideline-adherent care, reduced/increased imaging as appropriate).
RESULTS: Five trials met eligibility criteria. One tested provision of information about appropriate osteoporosis treatment in bone density reports; two tested provision of criteria and treatment for heart failure in echocardiogram reports; one tested provision of reminders for when routine imaging is not needed in lumbar spine and knee radiography reports; and one tested inclusion of epidemiological data in lumbar spine imaging reports. All trials were susceptible to bias, and four did not blind all participants. Low certainty evidence from two trials found adding information about appropriate care may increase care quality compared to a standard report (RR 1.20 (95% CI 0.96 to 1.50), two trials, 1,548 participants, I2 = 49). This was supported by outcomes of two additional trials that also provided specific clinical guidance.
CONCLUSIONS: The present review suggests that providing specific guidance on appropriate clinical intervention in imaging reports may improve patient care. Further high-quality trials are needed to confirm these findings. Prospective PROSPERO registration CRD42020153961.

DOI: https://doi.org/10.1016/j.crad.2022.02.011
Adv Health Sci Educ Theory Pract. 2022 Apr 02.

Presenting cases in front of patients: implications for a key medical education genre.

Anneke van Enk, Laura Nimmon, Heather Buckley, Cary Cuncic, Carolyn Canfield, Kiran Veerapen, Cheryl Holmes.

  Case presentations have been researched as both an important form of intra/inter-professional communication, where a patient's clinical information is shared among health professionals involved in their care, and an equally key discursive tool in education, where learners independently assess a patient and present the case to their preceptor and/or care team. But what happens to the case presentation, a genre that governs physician (and learner) talk about patients, when it is used in patients' presence? While they were commonly used at the bedside in the past, case presentations today are more commonly performed in hallways or conference rooms, out of patient earshot. This paper draws on interview data from a study involving patient-present case presentations in a medical education setting. Our analysis asks what participants' metageneric comments about the encounter can teach us about the genre, about patient involvement in medical education, and about linguistic adaptations to the genre that the profession might make to support patient involvement.

Keywords:  Bedside teaching; Case presentation; Genre; Medical education; Patient involvement

DOI:  https://doi.org/10.1007/s10459-022-10105-x
Kidney360. 2020 Nov 25. 1(11): 1244-1253

Characteristics and Effectiveness of Dedicated Care Programs for Patients Starting Dialysis: A Systematic Review.

Mirna Attalla, Zoe Friedman, Sandra McKeown, Ziv Harel, Jay Hingwala, Amber O Molnar, Patrick Norman, Samuel A Silver.

  Background: Dedicated care programs that provide increased support to patients starting dialysis are increasingly being used to reduce the risk of complications. The objectives of this systematic review were to determine the characteristics of existing programs and their effect on patient outcomes.Methods: We searched Embase, MEDLINE, Web of Science, Cochrane CENTRAL, and CINAHL from database inception to November 20, 2019 for English-language studies that evaluated dedicated care programs for adults starting maintenance dialysis in the inpatient or outpatient setting. Any study design was eligible, but we required the presence of a control group and prespecified patient outcomes. We extracted data describing the nature of the interventions, their components, and the reported benefits.
Results: The literature search yielded 12,681 studies. We evaluated 66 full texts and included 11 studies (n=6812 intervention patients); eight of the studies evaluated hemodialysis programs. All studies were observational, and there were no randomized controlled trials. The most common interventions included patient education (n=11) and case management (n=5), with nurses involved in nine programs. The most common outcomes were mortality (n=8) and vascular access (n=4), with only three studies reporting on the uptake of home dialysis and none on transplantation. We identified four high-quality studies that combined patient education and case management; in these programs, the relative reduction in 90-day mortality ranged from 22% (95% CI, -3% to 41%) to 49% (95% CI, 33% to 61%). Pooled analysis was not possible due to study heterogeneity.
Conclusions: Few studies have evaluated dedicated care programs for patients starting dialysis, especially their effect on home dialysis and transplantation. Whereas multidisciplinary care models that combine patient education with case management appear to be promising, additional prospective studies that involve patients in their design and execution are needed before widespread implementation of these resource-intensive programs.

Keywords:  chronic dialysis; chronic hemodialysis; chronic kidney failure; dialysis; end stage kidney disease; mortality; vascular access

DOI:  https://doi.org/10.34067/KID.0004052020
BMC Health Serv Res. 2022 Apr 07. 22(1): 459

Describing workplace interventions aimed to improve health of staff in hospital settings - a systematic review.

Verity Worley, Penny Fraser, Steven Allender, Kristy A Bolton.

  BACKGROUND: A large proportion of staff working in hospital settings are overweight or obese, have poor dietary habits and low physical activity levels. The workplace is a priority setting for health promotion. This systematic review will describe dietary and physical activity workplace interventions that have aimed to improve the health of staff in hospital settings; and the barriers and enablers of implementing these interventions.METHODS: A systematic search retrieved 551 studies from 2004 to 2020 using the following databases CINAHL Complete, MEDLINE Complete, Academic Search Complete, Global Health, Health Source Nursing/Academic Edition and PsycINFO. Studies were included if they: (1) took place in a hospital setting; (2) employed a physical activity or dietary intervention to improve the well-being of staff; (3) the intervention duration was 12 weeks or over; (4) used a control group. The Integrated quality Criteria for the Review of Multiple Study designs (ICROMS) and National Institute of Health's National Heart Lung and Blood Institute Quality Assessment Tools for Observational Cohort and Cross-Sectional Studies tools were used to assess quality of included studies. A narrative review was conducted.
RESULTS: Quality analysis identified six studies of high quality, nine moderate quality, and three low quality. Of these 18 studies, 15 reported at least one positive health outcome. The evidence revealed that multi-component strategies, financial incentives and motivational strategies were the most effective approaches to improve health behaviours of hospital staff.
CONCLUSION: Hospital-based dietary and physical activity workplace interventions show promise as an effective strategy for improving health behaviours of hospital staff. Methodological limitations highlight the need for more research from high-quality, randomised control trials, to gain further insight into the benefits of workplace interventions in hospital settings.

Keywords:  Health behaviours; Hospital; Staff; Systematic review; Workplace intervention

DOI:  https://doi.org/10.1186/s12913-021-07418-9
J Adv Nurs. 2022 Apr 05.

Men's help-seeking and engagement with general practice: An integrative review.

Ruth Mursa, Christopher Patterson, Elizabeth Halcomb.

  AIM: To critically synthesize the literature that describes men's help-seeking and engagement with general practice.DESIGN: Integrative literature review.
DATA SOURCES: CINAHL plus, Medline and APA PsycInfo were searched for papers published between 1999 and March 2021.
REVIEW METHODS: After screening titles and abstracts, full-text papers were screened against inclusion / exclusion criteria. All included papers were assessed for methodological quality. Findings were extracted, critically examined and synthesized into themes.
RESULTS: Twenty studies met the inclusion criteria. Thematic analysis revealed four themes related to; (1) structural barriers, (2) internal barriers, (3) men's understanding of the role of general practice, and (4) self-care and help-seeking. The findings indicate that men can find general practice unwelcoming and unaccommodating. Men can also experience psychological barriers that impact engagement and help-seeking. Men predominantly view general practice as a source of acute health care and do not appreciate the role of general practice in preventive health care and advice.
CONCLUSION: This review has provided insight into the issues around the barriers to health care engagement, men's understanding of the role of general practice and their associated help-seeking. Seeking to further understand these issues could assist in the development of strategies to promote engagement of men with general practice health care.
IMPACT: This review highlights research about men's engagement with general practice and the missed opportunities in receiving preventive health care and education. Enhancing men's engagement with general practice has the potential to reduce the impact of their health on quality of life and improve health outcomes.

Keywords:  general practice; health care utilization; help-seeking; men; primary health care

DOI:  https://doi.org/10.1111/jan.15240
J Health Organ Manag. 2022 Apr 05. 36(9): 133-157

The patient as a prosumer of healthcare: insights from a bibliometric-interpretive review.

Maria Vincenza Ciasullo, Weng Marc Lim, Mohammad Fakhar Manesh, Rocco Palumbo.

  PURPOSE: Healthcare policies around the globe are aimed at achieving patient-centeredness. The patient is understood as a prosumer of healthcare, wherein healthcare service co-production and value co-creation take center stage. The article endeavors to unpack the state of the literature on the innovations promoting the transition toward patient-centeredness, informing policy and management interventions fostering the reconceptualization of the patient as a prosumer of healthcare services.DESIGN/METHODOLOGY/APPROACH: A hybrid review methodology consisting of a bibliometric-interpretive review following the Scientific Procedures and Rationales for Systematic Literature Reviews (SPAR-4-SLR) protocol is used. The bibliometric component enabled us to objectively map the extant scientific knowledge into research streams, whereas the interpretive component facilitated the critical analysis of research streams.
FINDINGS: Patient-centeredness relies on a bundle of innovations that are enacted through a cycle of patients' activation, empowerment, involvement and engagement, wherein the omission of any steps arrests the transition toward service co-production and value co-creation. Institutional, organizational and cognitive barriers should be overcome to boost the transition of patients from consumers to prosumers in a patient-centered model of healthcare.
ORIGINALITY/VALUE: The article delivers the state of the art of the scientific literature in the field of innovations aimed at sustaining the transition toward patient-centeredness and provides some food for thoughts to scholars and practitioners who wish to push forward service co-production and value co-creation in healthcare.

Keywords:  Bibliometric; Co-creation; Co-production; Healthcare; Innovation; Interpretive; Patient; Prosumer; Review; SPAR-4-SLR; Service; Value

DOI:  https://doi.org/10.1108/JHOM-11-2021-0401
J Pediatr Psychol. 2022 Apr 04. pii: jsac027. [Epub ahead of print]

Bringing PROMIS to Early Childhood: Introduction and Qualitative Methods for the Development of Early Childhood Parent Report Instruments.

David Cella, Courtney K Blackwell, Lauren S Wakschlag.

  OBJECTIVE: Provide an overview of the Patient-Reported Outcomes Measurement Information System (PROMIS®) Early Childhood Parent Report measurement development project and describe its qualitative methods.METHODS: The PROMIS Early Childhood (PROMIS EC) initiative used the PROMIS mixed-methods approach to patient-reported outcome development, with insight from the developmental specification framework to create parent report measures appropriate for assessing young children's health-related quality of life. Qualitative methods to develop these instruments included expert input, literature and measure review, and parent concept elicitation and cognitive interviews to confirm the measure frameworks, item understandability, and developmental appropriateness.
RESULTS: Twelve measures resulted from the PROMIS EC initiative. These parent report instruments cover young children's physical, mental, and social health.
CONCLUSIONS: The new PROMIS EC Parent Report instruments offer clinicians and researchers brief and psychometrically robust tools to evaluate young children's physical, mental, and social health outcomes. Aligned with the PROMIS Pediatric instruments, the early childhood versions enable coherent lifespan measurement starting at age 1 while maintaining developmental sensitivity.

Keywords:  infancy and early childhood; measure validation; preschool children; qualitative methods; quality of life; research design and methodology

DOI:  https://doi.org/10.1093/jpepsy/jsac027
BMC Health Serv Res. 2022 Apr 04. 22(1): 440

Effectiveness of registered nurses on system outcomes in primary care: a systematic review.

Julia Lukewich, Shabnam Asghari, Emily Gard Marshall, Maria Mathews, Michelle Swab, Joan Tranmer, Denise Bryant-Lukosius, Ruth Martin-Misener, Allison A Norful, Dana Ryan, Marie-Eve Poitras.

  BACKGROUND: Internationally, policy-makers and health administrators are seeking evidence to inform further integration and optimal utilization of registered nurses (RNs) within primary care teams. Although existing literature provides some information regarding RN contributions, further evidence on the impact of RNs towards quality and cost of care is necessary to demonstrate the contribution of this role on health system outcomes. In this study we synthesize international evidence on the effectiveness of RNs on care delivery and system-level outcomes in primary care.METHODS: A systematic review was conducted in accordance with Joanna Briggs Institute methodology. Searches were conducted in CINAHL, MEDLINE Complete, PsycINFO, and Embase for published literature and ProQuest Dissertations and Theses and MedNar for unpublished literature between 2019 and 2022 using relevant subject headings and keywords. Additional literature was identified through Google Scholar, websites, and reference lists of included articles. Studies were included if they measured effectiveness of a RN-led intervention (i.e., any care/activity performed by a primary care RN within the context of an independent or interdependent role) and reported outcomes of these interventions. Included studies were published in English; no date or location restrictions were applied. Risk of bias was assessed using the Integrated Quality Criteria for Review of Multiple Study Designs tool. Due to the heterogeneity of included studies, a narrative synthesis was undertaken.
RESULTS: Seventeen articles were eligible for inclusion, with 11 examining system outcomes (e.g., cost, workload) and 15 reporting on outcomes related to care delivery (e.g., illness management, quality of smoking cessation support). The studies suggest that RN-led care may have an impact on outcomes, specifically in relation to the provision of medication management, patient triage, chronic disease management, sexual health, routine preventative care, health promotion/education, and self-management interventions (e.g. smoking cessation support).
CONCLUSIONS: The findings suggest that primary care RNs impact the delivery of quality primary care, and that RN-led care may complement and potentially enhance primary care delivered by other primary care providers. Ongoing evaluation in this area is important to further refine nursing scope of practice policy, determine the impact of RN-led care on outcomes, and inform improvements to primary care infrastructure and systems management to meet care needs.
PROTOCOL REGISTRATION ID: PROSPERO: International prospective register of systematic reviews. 2018. ID= CRD42018090767 .

Keywords:  Care delivery; Effectiveness; Outcomes; Primary care nursing; Primary healthcare; Registered nurse; Systematic review

DOI:  https://doi.org/10.1186/s12913-022-07662-7
Kidney360. 2021 Jan 28. 2(1): 114-128

Pathways Project: Development of a Multimodal Innovation To Improve Kidney Supportive Care in Dialysis Centers.

Dale E Lupu, Annette Aldous, Glenda Harbert, Manjula Kurella Tamura, Laura M Holdsworth, Amanda Nicklas, Brandy Vinson, Alvin H Moss.

  Current care models for older patients with kidney failure in the United States do not incorporate supportive care approaches. The absence of supportive care contributes to poor symptom management and unwanted forms of care at the end of life. Using an Institute for Healthcare Improvement Collaborative Model for Achieving Breakthrough Improvement, we conducted a focused literature review, interviewed implementation experts, and convened a technical expert panel to distill existing evidence into an evidence-based supportive care change package. The change package consists of 14 best-practice recommendations for the care of patients seriously ill with kidney failure, emphasizing three key practices: systematic identification of patients who are seriously ill, goals-of-care conversations with identified patients, and care options to respond to patient wishes. Implementation will be supported through a collaborative consisting of three intensive learning sessions, monthly learning and collaboration calls, site data feedback, and quality-improvement technical assistance. To evaluate the change package's implementation and effectiveness, we designed a mixed-methods hybrid study involving the following: (1) effectiveness evaluation (including patient outcomes and staff perception of the effectiveness of the implementation of the change package); (2) quality-improvement monitoring via monthly tracking of a suite of quality-improvement indicators tied to the change package; and (3) implementation evaluation conducted by the external evaluator using mixed methods to assess implementation of the collaborative processes. Ten dialysis centers across the country, treating approximately 1550 patients, will participate. This article describes the process informing the intervention design, components of the intervention, evaluation design and measurements, and preliminary feasibility assessments.Clinical Trial registry name and registration number: Pathways Project: Kidney Supportive Care, NCT04125537.

Keywords:  advance care planning; communication; end of life; geriatric and palliative nephrology; goals of care; implementation science; palliative care; shared decision-making; supportive care

DOI:  https://doi.org/10.34067/KID.0005892020
Semin Dial. 2022 Apr 06.

Patient-reported outcomes and patient voices.

Gulay Asci, Ercan Ok.

Online hemodiafilration (HDF) treatment may be associated with better quality of life due to improved clearance of middle-molecular-weight uremic toxins and hemodynamic stability in dialysis patients, in addition to better overall survival.

DOI: https://doi.org/10.1111/sdi.13076
Med J Aust. 2022 Apr 06.

A general practice intervention for people at risk of poor health outcomes: the Flinders QUEST cluster randomised controlled trial and economic evaluation.

Richard L Reed, Leigh Roeger, Yuen H Kwok, Billingsley Kaambwa, Stephen Allison, Richard H Osborne.

  OBJECTIVE: To determine whether a multicomponent general practice intervention cost-effectively improves health outcomes and reduces health service use for patients at high risk of poor health outcomes.DESIGN, SETTING: Clustered randomised controlled trial in general practices in metropolitan Adelaide.
PARTICIPANTS: Three age-based groups of patients identified by their general practitioners as being at high risk of poor health outcomes: children and young people (under 18 years), adults (18-64 years) with two or more chronic diseases, and older people (65 years or more).
INTERVENTION: Enrolment of patients with a preferred GP, longer general practice appointments, and general practice follow-up within seven days of emergency department and hospital care episodes. Intervention practices received payment of $1000 per enrolled participant.
MAIN OUTCOME MEASURES: Primary outcome: change in self-rated health between baseline and 12-month follow-up for control (usual care) and intervention groups.
SECONDARY OUTCOMES: numbers of emergency department presentations and hospital admissions, Medicare specialist claims and Pharmaceutical Benefits Scheme (PBS) items supplied, Health Literacy Questionnaire scores, and cost-effectiveness of the intervention (based on the number of quality-adjusted life-years [QALYs] gained over 12 months, derived from EQ-5D-5L utility scores for the two adult groups).
RESULTS: Twenty practices with a total of 92 GPs were recruited, and 1044 eligible patients participated. The intervention did not improve self-rated health (coefficient, -0.29; 95% CI, -2.32 to 1.73), nor did it have significant effects on the numbers of emergency department presentations (incidence rate ratio [IRR], 0.90; 95% CI, 0.69-1.17), hospital admissions (IRR, 0.90; 95% CI, 0.66-1.22), Medicare specialist claims (IRR, 1.00; 95% CI, 0.91-1.09), or PBS items supplied (IRR, 0.99; 95% CI, 0.96-1.03), nor on Health Literacy Questionnaire scores. The intervention was effective in terms of QALYs gained (v usual care: difference, 0.032 QALYs; 95% CI, 0.001-0.063), but the incremental cost-effectiveness ratio was $69 585 (95% CI, $22 968-$116 201) per QALY gained, beyond the willingness-to-pay threshold.
CONCLUSIONS: Our multicomponent intervention did not improve self-rated health, health service use, or health literacy. It achieved greater improvement in quality of life than usual care, but not cost-effectively.
TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry, ACTRN12617001589370 (prospective).

Keywords:  Chronic disease; Cost-benefit analysis; General practice; Health services research; Primary health care

DOI:  https://doi.org/10.5694/mja2.51484
Kidney Med. 2022 Mar;4(3): 100436

Kidney Health For All: Bridging the Gap in Kidney Health Education and Literacy.

World Kidney Day Joint Steering Committee

  The high burden of kidney disease, global disparities in kidney care, and poor outcomes of kidney failure bring a concomitant growing burden to persons affected, their families, and carers, and the community at large. Health literacy is the degree to which persons 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 largely rests with health care providers communicating and educating effectively in codesigned partnership with those with kidney disease. For kidney policy makers, health literacy provides the imperative to shift organizations 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.

Keywords:  educational gap; empowerment; health literacy; health policy; information technology; kidney health; partnership; prevention; social media

DOI:  https://doi.org/10.1016/j.xkme.2022.100436
Aust Health Rev. 2022 Apr;46(2): 233-243

How patient centric is health policy development? The case of the Parliamentary Inquiry into Sleep Health Awareness in Australia.

Aaron Schokman, Nick Glozier, Melissa Aji, Yu Sun Bin, Kristina Kairaitis, Janet M Y Cheung.

Objective Parliamentary inquiries into health-related issues empower everyday Australians to contribute to the development and reform of health policy. We explored how patient and family/carers concerns are translated by this process, using a less well-known disease, narcolepsy, as an example. Methods Written submissions made to the Parliamentary Inquiry into Sleep Health Awareness in Australia 2018 by self-identified patients or family/carers with narcolepsy (n = 13) were extracted and thematically analysed using the Framework Approach. Each submission was systematically coded and abstracted into emergent themes before being evaluated against the final policy recommendations. Results Although patients and their family/carers prioritised issues that affected their daily lives (i.e. mental health sequela, workplace accommodations), the policy recommendations in the report focused mainly on issues of healthcare infrastructure, funding and engagement. Our analysis highlighted several barriers that patients and their family/carers face when contributing to this part of healthcare policy formation. Conclusions Our findings suggest that the parliamentary inquiry process in its current form is not an ideal vehicle by which patients and family/carers can contribute or influence healthcare policy. Despite calling for submissions from patients and their family/carers, the final report and subsequent health policy recommendations made by the inquiry do not appear to be patient-centric or reflective of the submissions written by these stakeholders. Increased transparency, development of processes to balance stakeholder priorities and improved accessibility for stakeholders to participate are needed if health-related parliamentary inquiries are to produce healthcare policy that ultimately meets the needs of patients and family/carers.

DOI: https://doi.org/10.1071/AH21156
JAMA Netw Open. 2022 Apr 01. 5(4): e225982

Effectiveness and Cost-effectiveness of an Empowerment-Based Self-care Education Program on Health Outcomes Among Patients With Heart Failure: A Randomized Clinical Trial.

Doris Sau-Fung Yu, Polly Wai-Chi Li, Shirley Xue Li, Robert D Smith, Sunny Chiu-Sun Yue, Bryan P Y Yan.

Importance: Strategies that enhance self-care of patients with heart failure reduce mortality and health care use.Objective: To examine whether an empowerment-based self-care education program was more effective and cost-effective to improve self-care, health status, and hospital service use than a didactic education program in patients with heart failure.
Design, Setting, and Participants: In this double-blind randomized clinical trial, a consecutive sample of 988 patients with heart failure from the cardiac clinics of 2 regional hospitals underwent eligibility screening from February 1, 2017, to May 31, 2019, using the criteria of age of 55 years or older, heart failure diagnosed 6 months before screening, and New York Heart Association class II to IV. A total of 236 participants were randomized to the empowerment (n = 118) or education (n = 118) group.
Interventions: The 12-week, group-based, empowerment-based education program included self-care assessment, goal-orientated actions in symptom recognition and response, fluid and dietary modification, and lifestyle management. Didactic education covered the same topics without empowerment strategies.
Main Outcomes and Measures: The primary outcome was self-care measured by the Self-care Heart Failure Index (SCHFI) maintenance, management, and symptom perception subscales at posttest and 3-month end points. Secondary outcomes included measures of knowledge, confidence, health-related quality of life, and health service use. Direct, indirect, and social costs of the 2 programs were collected for cost-effectiveness analysis.
Results: A total of 236 Chinese patients (mean [SD] age, 70 [8.0] years; 149 [63.1%] men) were included in the study. The empowerment group reported significantly greater improvement in SCHFI management scores (mean difference, 13.76; 95% CI, 5.89-21.62; Cohen d = 0.46 at posttest and Cohen d = 0.35 at 3 months) and symptom perception scores (mean difference, 20.36; 95% CI, 13.98-26.75; Cohen d = 0.84 at posttest and Cohen d = 0.61 at 3 months). The empowerment group had lower risks of emergency department attendance (incidence rate ratio, 0.55; 95% CI, 0.31-0.95; P = .03) and hospital admission (incidence rate ratio, 0.38; 95% CI, 0.21-0.68; P = .001) and better improved self-care knowledge (change in score [empowerment minus education], 1.29; 95% CI, 0.48-2.09) and confidence (change in score [empowerment minus education], 7.98; 95% CI, 1.91-14.05). Empowerment was cost-saving and cost-effective at T2 compared with the education group for quality-adjusted life-years, with an incremental cost-effectiveness ratio of -114 485.
Conclusion and Relevance: In this randomized clinical trial, an empowerment approach led to clinically relevant improvement in symptom perception and self-care management among patients with heart failure. Its cost-effectiveness in improving these prognostic factors also benefits the patient-reported outcome.
Trial Registration: Chinese Clinical Trial Registry: ChiCTR-IOR-16008254.

DOI: https://doi.org/10.1001/jamanetworkopen.2022.5982