bims-paceca 2022-04-24 papers

bims-paceca

Biomed News

on Patient-centred care

Issue of 2022‒04‒24
twenty-two papers selected by
Rob Penfold
Queensland Health

A Patient-Centred Medical Home Care Model for Community-Dwelling Older Adults in Singapore: A Mixed-Method Study on Patient's Care Experience.
Shared decision making in medicine - improving but still a work in progress.
Nursing interventions that humanise care for patients affected by COVID-19 in isolation units: An integrative review.
Kindness, Listening, and Connection: Patient and Clinician Key Requirements for Emotional Support in Chronic and Complex Care.
Using the Delphi Method to Elucidate Patient and Caregiver Experiences of Cancer Care.
Home care providers' perceptions of shared decision making with older clients (and their caregivers): a cross-sectional study.
Publicly Available, Interactive Web-Based Tools to Support Advance Care Planning: Systematic Review.
Acting to teach communication skills to nurses.
Observable indicators of person-centred care: an interview study with patients, relatives and professionals.
Do Interventions Reducing Social Vulnerability Improve Health in Community Dwelling Older Adults? A Systematic Review.
The Impact of Health Professionals' Language on Patient Experience: A Case Study.
Patients' experiences and perspectives of patient-reported outcome measures in clinical care: A systematic review and qualitative meta-synthesis.
Informing the Alfred Registry for Emergency Care Project: An analysis of presenting complaint documentation in an emergency department.
Family Involvement in Caring for Inpatients in Acute Care Hospital Settings: A Systematic Review of Literature.
Interprofessional Collaboration and Diabetes Management in Primary Care: A Systematic Review and Meta-Analysis of Patient-Reported Outcomes.
Development and content validity of the Experienced Patient-Centeredness Questionnaire (EPAT)-A best practice example for generating patient-reported measures from qualitative data.
Exploring expectations and assumptions in the public and patient engagement literature: A meta-narrative review.
Measuring PROMIS® Global Health in Early Childhood.
Diagnosis clarification by generalization to patient-friendly terms and definitions: Validation study.
Co-Produce, Co-Design, Co-Create, or Co-Construct-Who Does It and How Is It Done in Chronic Disease Prevention? A Scoping Review.
Strategies to Understand What Matters to Advanced Cancer Patients in Advance Care Planning: A Qualitative Study Using the Lifeline Interview Method.
Improving In-Hospital Care For Older Adults: A Mixed Methods Study Protocol to Evaluate a System-Wide Sub-Acute Care Intervention in Canada.

Int J Environ Res Public Health. 2022 Apr 14. pii: 4778. [Epub ahead of print]19(8):

A Patient-Centred Medical Home Care Model for Community-Dwelling Older Adults in Singapore: A Mixed-Method Study on Patient's Care Experience.

Mimaika Luluina Ginting, Chek Hooi Wong, Zoe Zon Be Lim, Robin Wai Munn Choo, Sheena Camilla Hirose Carlsen, Grace Sum, Hubertus Johannes Maria Vrijhoef.

  Patient-Centred Medical Home (PCMH) is a strategy to enhance patient-centredness to improve care experience. We aimed to understand patient experience of an integrated PCMH model for complex community-dwelling older adults in Singapore. We used a mixed-method design with a prospective single-group pre-post quantitative component and a concurrent qualitative component. Participants were administered the validated Consumer Assessment of Health Providers and Systems Clinician & Group Survey (CG-CAHPS) at baseline (N = 184) and 6-month (N = 166) post-enrolment. We conducted focus group discussions (FGDs) on a purposive sample of 24 participants. Both methods suggest better care experience in PCMH relative to usual care. There were improvements in the CG-CAHPS measures on patient-provider communication, care coordination, office staff interactions, support for patients in caring for their own health, and provider rating in PCMH relative to usual care. In the FGDs, participants reported benefits of consolidated appointments and positive experience in sustained patient-provider relationship, shared-decision making, and family/caregiver engagement in PCMH. Participants may not fully comprehend the concept of integrated care, hindering both the effective communication of the intended care model and perceived benefits such as the provision of multidisciplinary team-based care.

Keywords:  care quality; integrated care; mixed-method; patient experience; patient-centred care; patient-centred medical home

DOI:  https://doi.org/10.3390/ijerph19084778
Patient Educ Couns. 2022 Mar 29. pii: S0738-3991(22)00134-3. [Epub ahead of print]

Shared decision making in medicine - improving but still a work in progress.

Arnstein Finset, Richard L Street.

DOI: https://doi.org/10.1016/j.pec.2022.03.020
Infect Dis Health. 2022 Apr 01. pii: S2468-0451(22)00005-0. [Epub ahead of print]

Nursing interventions that humanise care for patients affected by COVID-19 in isolation units: An integrative review.

Júlio Belo Fernandes, Diana Alves Vareta, Sónia Fernandes, Cidália Castro, Aida Simões, Dina Peças, Ana Almeida.

  BACKGROUND: During the global pandemic, the increasing number of hospitalised patients affected by COVID-19 led to a shortage of nurses. This situation can cause nurses to focus their care on managing the acute aspects of the disease, neglecting interventions that can humanise their practices and improve quality of care. This review aims to identify nurses' interventions that can humanise care for patients affected by COVID-19 in isolation units.METHODS: Whittemore and Knafl's integrative review methodology was used to structure and conduct the review. The literature search was conducted using CINAHL, MEDLINE, Nursing & Allied Health, MedicLatina, Sciencedirect, LILACS, and PubMed databases. Researchers performed the final search in January 2021.
RESULTS: A total of seven articles were included in this review. Interventions by nursing staff that may humanise care for patients affected by COVID-19 in isolation units fall within two themes: "expressive dimension interventions", related to the establishment of communication with patients and their families, providing psychological comfort, shared decision-making and patient education; and "instrumental dimension interventions", associated with providing patients physical comfort, and symptom management.
CONCLUSION: This review provides insight into both "expressive dimension" and "instrumental dimension" of nursing interventions that may humanise care to patients affected by COVID-19 in isolation units. This knowledge will allow nurses to improve their care practices, providing more holistic, humanised care for these patients.

Keywords:  COVID-19; Hospitals; Isolation; Nursing care; Patients

DOI:  https://doi.org/10.1016/j.idh.2022.03.001
J Patient Exp. 2022 ;9 23743735221092627

Kindness, Listening, and Connection: Patient and Clinician Key Requirements for Emotional Support in Chronic and Complex Care.

Jane Bradshaw, Nazlee Siddiqui, David Greenfield, Anita Sharma.

  Emotional support for patients is critical for achieving person-centered care. However, the literature evidences an ongoing challenge in embedding emotional support within current health services. This study aimed to investigate the strategies to embed emotional support from the perspectives of patients and clinicians. This is an exploratory qualitative study that collected data through focus group discussions (FGDs) and interviews from 11 patients, 2 carers, and 7 clinicians in the multi-disciplinary care teams in an outpatient complex and chronic care setting in New South Wales, Australia. The FGDs and interviews were recorded, transcribed, and thematically analyzed. Three main themes emerged from the experience of both the patients and clinicians: (1) warmth and kindness, (2) deep listening, and (3) social connection in the process of treatment. Clinicians' and patients' shared experience of these themes was key to embed emotional support in care. Practical strategies including promoting shared understanding of emotional support, enhancing provider's capability to deliver emotional support, and building patient's networking opportunities in treatment processes were discussed to facilitate emotional support in patient care and health services.

Keywords:  clinician–patient relationship; communication; organizational culture; patient perspectives/narratives; patient satisfaction; patient/relationship centered skills; trust

DOI:  https://doi.org/10.1177/23743735221092627
J Patient Exp. 2022 ;9 23743735221092633

Using the Delphi Method to Elucidate Patient and Caregiver Experiences of Cancer Care.

Janet Ellis, Miriam von Mücke Similon, Melissa B Korman, Sophia den Otter-Moore, Alva Murray, Kevin Higgins, Danny Enepekides, Marlene Jacobson.

  Objective: Identify the most salient elements of the head and neck cancer (HNC) care experience described by patients and caregivers in focus group interviews. Methods: Three focus groups of patients and caregivers were facilitated by research assistants and clinicians. Open-ended guiding questions captured/elicited aspects of care that were appreciated, warranted improvement, or enhanced communication and information. A four-step Delphi process derived consensus among focus group facilitators (n = 5) regarding salient discussion points from focus group conversations. Results: Seven salient themes were identified: (1) information provision, (2) burden related to symptoms and treatment side effects, (3) importance of social support, (4) quality of care at both hospital and provider levels, (5) caring for the person, not just treating cancer, (6) social and emotional impact of HNC, and (7) stigma and insufficient information regarding human papillomavirus-related HNC. Conclusion: Participants reported varying needs and support preferences, a desire for individualized communication, and to feel cared for as both a person and a patient. Findings illuminate the intricate details underlying high-quality, compassionate, person-centered HNC cancer care.

Keywords:  clinician–patient relationship; communication; empathy; interprofessional education; patient feedback; patient perspectives/narratives; patient/relationship-centered skills; qualitative methods

DOI:  https://doi.org/10.1177/23743735221092633
Nurs Health Sci. 2022 Apr 22.

Home care providers' perceptions of shared decision making with older clients (and their caregivers): a cross-sectional study.

Claudia Lai, Paul Holyoke, Karine V Plourde, Lily Yeung, France Légaré.

  Interprofessional care teams can play a key role in supporting older adults (and caregivers) in making informed health decisions, yet shared decision-making is not widely practiced in home care. Based on an earlier needs assessment with older adults (and caregivers) with home care experience, we aimed to explore the perceptions of home care teams on the decisions facing their clients and their perceived involvement in shared decision-making. A cross-sectional study was conducted with 614 home care providers (nurses, personal support workers, rehabilitation professionals) in three Canadian provinces (Quebec, Ontario and Alberta). Home care providers considered the decision "to stay at home or move" as the most difficult for older adults. Those most frequently involved in decision-making with older adults were family members, and least involved were physicians. Although all home care providers reported high levels of perceived shared decision-making, we detected an effect of respondent's discipline on self-perceived shared decision-making; nurses and rehabilitation professionals reported significantly higher levels of shared decision-making than personal support workers. A more tailored approach is required to support shared decision-making in interprofessional care teams.

Keywords:  Aged; Aged, 80 and over; Allied Health Personnel; Decision Making, Shared; Home Care Services; Participatory Research

DOI:  https://doi.org/10.1111/nhs.12946
J Med Internet Res. 2022 Apr 20. 24(4): e33320

Publicly Available, Interactive Web-Based Tools to Support Advance Care Planning: Systematic Review.

Charlèss Dupont, Tinne Smets, Fanny Monnet, Lara Pivodic, Aline De Vleminck, Chantal Van Audenhove, Lieve Van den Block.

  BACKGROUND: There is an increasing number of interactive web-based advance care planning (ACP) support tools, which are web-based aids in any format encouraging reflection, communication, and processing of publicly available information, most of which cannot be found in the peer-reviewed literature.OBJECTIVE: This study aims to conduct a systematic review of web-based ACP support tools to describe the characteristics, readability, and quality of content and investigate whether and how they are evaluated.
METHODS: We systematically searched the web-based gray literature databases OpenGrey, ClinicalTrials.gov, ProQuest, British Library, Grey Literature in the Netherlands, and Health Services Research Projects in Progress, as well as Google and app stores, and consulted experts using the following eligibility criteria: web-based, designed for the general population, accessible to everyone, interactive (encouraging reflection, communication, and processing of information), and in English or Dutch. The quality of content was evaluated using the Quality Evaluation Scoring Tool (score 0-28-a higher score indicates better quality). To synthesize the characteristics of the ACP tools, readability and quality of content, and whether and how they were evaluated, we used 4 data extraction tables.
RESULTS: A total of 30 tools met the eligibility criteria, including 15 (50%) websites, 10 (33%) web-based portals, 3 (10%) apps, and 2 (7%) with a combination of formats. Of the 30 tools, 24 (80%) mentioned a clear aim, including 7 (23%) that supported reflection or communication, 8 (27%) that supported people in making decisions, 7 (23%) that provided support to document decisions, and 2 (7%) that aimed to achieve all these aims. Of the 30 tools, 7 (23%) provided information on the development, all of which were developed in collaboration with health care professionals, and 3 (10%) with end users. Quality scores ranged between 11 and 28, with most of the lower-scoring tools not referring to information sources.
CONCLUSIONS: A variety of ACP support tools are available on the web, varying in the quality of content. In the future, users should be involved in the development process of ACP support tools, and the content should be substantiated by scientific evidence.
TRIAL REGISTRATION: PROSPERO CRD42020184112; https://tinyurl.com/mruf8b43.

Keywords:  advance care planning; health communication; quality of online content; systematic review; web-based tools

DOI:  https://doi.org/10.2196/33320
Clin Teach. 2022 Apr 22.

Acting to teach communication skills to nurses.

Alexis Del Vecchio, Phillip Charles Moschella, Janice Garrison Lanham, Jean Ellen Zavertnik.

BACKGROUND: Interpersonal and communication skills are core competencies for nursing students. Empathetic, patient-centred communication improves patient outcomes and the care experience. Nursing trainees have reported a lack of preparation and confidence in communication and interpersonal skills with patients and members of the health care team. Acting-based hands-on training may provide a novel approach to develop communication in nursing students.APPROACH: The corresponding author worked as a professional actor before pursuing a medical career. He created an acting-based workshop, inspired by classic acting exercises taught in drama conservatories for decades, to develop core communication and interpersonal skills for health care professionals. The course creator and an instructor with no acting background each facilitated the workshops. The initiative was taught to over 200 preclinical baccalaureate freshmen and sophomore nursing students as part of their clinical skills courses at one institution.
EVALUATION: Participants were asked to rate their self-efficacy for skills developed in the workshop using a 5-point Likert scale. A 4 or 5 rating was considered agreement. Most participants agreed the workshop developed their skills of self-awareness, observation, teamwork, flexibility, nonverbal and verbal communication, trust, mindfulness, body language awareness, active listening, and sensitivity to emotions expressed by others.
IMPLICATIONS: An acting-based teaching intervention is efficacious in instilling core communication and interpersonal skills to preclinical nursing students based on participants' self-efficacy ratings. This innovative way to teaching communication provides students with an experiential environment conducive to learning. Similar ratings between sessions suggest that health professions educators with no formal acting training can successfully teach this course.

DOI: https://doi.org/10.1111/tct.13489
BMJ Open. 2022 Apr 20. 12(4): e059308

Observable indicators of person-centred care: an interview study with patients, relatives and professionals.

Nina Ekman, Philip Moons, Charles Taft, Eva Boström, Andreas Fors.

  OBJECTIVE: To identify key observable indicators of person-centred care (PCC) from interviews with patients, relatives and professionals with experience of receiving or working with PCC.DESIGN: A qualitative interview study using deductive content analysis.
SETTING: Primary and hospital care settings in Western Sweden.
PARTICIPANTS: Twelve participants with extensive experience of receiving or working with PCC were interviewed: two patients, two patients representative with long-term conditions, one relative and informal carer, three registered nurses, one physician, two occupational therapists and one social worker/researcher.
RESULTS: Nine observable indicators were identified and subsumed under three predetermined categories: initiating, working and safeguarding the partnership. The first category comprised three subcategories: welcoming, interested and courteous reception; agreeing on structure and aims of the conversation; and eliciting patients' wishes for involvement of significant others. The second category comprised four subcategories: attentive, empathic and encouraging manner; promoting mutual understanding; promoting patient engagement; and encouraging and friendly body language. The last category consisted of two subcategories: collaboration and transparency in documentation and verifying that patient's and professional's views, goals and wants are correctly documented.
CONCLUSION: Our results underline the need for health professionals to actively and conscientiously convey to patients their interest in and respect for the patient as a person and their willingness to collaborate as partners in their care from the very outset of the interaction. Non-verbal behaviours were seen to play a major role in shaping patients' impressions of health professionals. Given that patients' first impressions were considered to impact the content, course and outcomes of the interaction, more research attention should be given to their implications for the effective delivery of PCC.

Keywords:  PUBLIC HEALTH; QUALITATIVE RESEARCH; Quality in health care

DOI:  https://doi.org/10.1136/bmjopen-2021-059308
Clin Interv Aging. 2022 ;17 447-465

Do Interventions Reducing Social Vulnerability Improve Health in Community Dwelling Older Adults? A Systematic Review.

Jasmine Mah, Kenneth Rockwood, Susan Stevens, Janice Keefe, Melissa K Andrew.

  Background: Social vulnerability occurs when individuals have been relatively disadvantaged by the social determinants of health. Complex interventions that reduce social vulnerability have the potential to improve health in older adults but robust evidence is lacking.Objective: To identify, appraise and synthesize evidence on the effectiveness of complex interventions targeting reduction in social vulnerability for improving health related outcomes (mortality, function, cognition, subjective health and healthcare use) in older adults living in the community.
Methods: A mixed methods systematic review was conducted. Five databases and targeted grey literature were searched for primary studies of all study types according to predetermined criteria. Data were extracted from each distinct intervention and quality was assessed using the Mixed Methods Appraisal Tool. Effectiveness data were synthesized using vote counting by direction of effect, combining p values and Albatross plots.
Results: Across 38 included studies, there were 34 distinct interventions categorized as strengthening social supports and communities, helping older adults and their caregivers navigate health and social services, enhancing neighbourhood and built environments, promoting education and providing economic stability. There was evidence to support positive influences on function, cognition, subjective health, and reduced hospital utilization. The evidence was mixed for non-hospital healthcare utilization and insufficient to determine effect on mortality.
Conclusion: Despite high heterogeneity and varying quality of studies, attention to reducing an older adult's social vulnerability assists in improving older adults' health.

Keywords:  complex interventions; older adults; social determinants; social frailty

DOI:  https://doi.org/10.2147/CIA.S349836
J Patient Exp. 2022 ;9 23743735221092572

The Impact of Health Professionals' Language on Patient Experience: A Case Study.

Naomi T Katz, Jade Jones, Leanne Mansfield, Michelle Gold.

  When people become patients, they become vulnerable to their healthcare system and healthcare clinicians. In this case study, we describe an example of patient distress caused by language overheard in the perioperative environment. Clinicians need to be mindful that the language we use may have a significant impact on patient experience, be it during direct conversation or from conversations overheard. This is an important component of patient-centered care.

Keywords:  clinician–patient relationship; communication; empathy; patient perspectives/narratives

DOI:  https://doi.org/10.1177/23743735221092572
PLoS One. 2022 ;17(4): e0267030

Patients' experiences and perspectives of patient-reported outcome measures in clinical care: A systematic review and qualitative meta-synthesis.

Liam Carfora, Ciara M Foley, Phillip Hagi-Diakou, Phillip J Lesty, Marianne L Sandstrom, Imogen Ramsey, Saravana Kumar.

BACKGROUND: Patient-reported outcome measures (PROMs) or patient-reported outcomes (PROs) are used by clinicians in everyday clinical practice to assess patients' perceptions of their own health and the healthcare they receive. By providing insight into how illness and interventions impact on patients' lives, they can help to bridge the gap between clinicians' expectations and what matters most to the patient. Given increasing focus on patient-centred care, the objective of this meta-synthesis was to summarise the qualitative evidence regarding patients' perspectives and experiences of the use of PROMs in clinical care.METHODS: A systematic search of the following databases was undertaken in August 2020: Medline, EMBASE, EMCARE, PsychINFO, Scopus and the Cochrane Library. This review was conducted and reported in line with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Methodological quality of the included studies was assessed using the Critical Appraisal Skills Programme checklist for qualitative research (CASP). A meta-ethnographic approach was used for data extraction and meta-synthesis of findings (PROSPERO registration: CRD42020202506).
RESULTS: Fourteen studies from a range of countries with differing qualitative research methodologies were identified. Three themes were identified, namely 'patient preferences regarding PROMs', 'patient perceived benefits' and 'barriers to patient engagement with PROMs'. The perspectives of patients suggested they preferred PROMs that were simple and relevant to their conditions and found benefits in the way they facilitated self-reflection and effective communication with their clinicians. Patients, however, questioned the relevance of some individual questions and purpose.
CONCLUSION: PROMs can be a useful tool in the clinical setting by enabling individualisation and patient centred care. This meta-synthesis provides insights into what patients find beneficial as well as barriers to their engagement, highlighting the importance of educating patients about PROMs.

DOI: https://doi.org/10.1371/journal.pone.0267030
Emerg Med Australas. 2022 Apr 20.

Informing the Alfred Registry for Emergency Care Project: An analysis of presenting complaint documentation in an emergency department.

Matthew White, Gerard M O'Reilly, Rob D Mitchell, Michael Noonan, Ryan Hiller, Biswadev Mitra, Andrew Paton, Kathryn Pristupa, Carl Luckhoff, De Villiers Smit, Peter A Cameron.

  OBJECTIVE: To assess the feasibility of an ED presenting complaint (PC) tool that categorised all ED PCs into 10 categories.METHODS: A retrospective analysis of 1445 consecutive patient encounters was conducted. The primary outcome was the frequency of use of the 10 PC categories.
RESULTS: Of the 1203 patient encounters meeting inclusion criteria, the PC tool was completed by clinicians in 574 (47.7%). When completed, the tool's 10 options were selected for most presentations (72.3%).
CONCLUSION: The PC tool captured the majority of presenting complaints in 10 categories. External validation is recommended.

Keywords:  emergency; health information; presenting complaint; quality; registry

DOI:  https://doi.org/10.1111/1742-6723.13984
SAGE Open Nurs. 2022 Jan-Dec;8:8 23779608221089541

Family Involvement in Caring for Inpatients in Acute Care Hospital Settings: A Systematic Review of Literature.

Elizabeth Gwaza, Gladys Msiska.

  Family members, also known as patients' guardians (PG) are involved in caring for inpatients in acute care hospital settings. The practice is adopted from Family Centred Care (FCC) approach. This literature review aimed to provide an overview of key findings in literature on the practice of involving PGs in acute care hospital settings We used a systematic literature search to select original research articles or systematic reviews published in English between 2008 and 2019 that discussed PGs in acute care hospital settings. Studies that discussed PGs in long-term care hospital or in-home settings were excluded from this literature review. Literature was sought from CINAHL, MEDLINE, and PsycINFO. CASP and JBI checklist was used to appraise the full-text articles for inclusion in the literature review. Twenty-six articles were included. Findings show that there is limited literature on this topic although healthcare institutions involve PGs in their routine inpatient care. Three themes emerged from the review; the FCC approach, roles of PGs in acute care hospitals, and implications of involving PGs in acute care hospitals. PGs offer any care that is left undone by nurses in acute care hospitals to ensure that their patients' needs are met. However, their involvement is not consistent with FCC principles. This leads to physical, psychosocial, and economic implications for PGs. We recommend that nurse practitioners should consistently implement FCC principles to enable PGs to offer meaningful care to their inpatients.

Keywords:  acute care hospital; family caregiver; family centred care; patient's guardian

DOI:  https://doi.org/10.1177/23779608221089541
J Pers Med. 2022 Apr 15. pii: 643. [Epub ahead of print]12(4):

Interprofessional Collaboration and Diabetes Management in Primary Care: A Systematic Review and Meta-Analysis of Patient-Reported Outcomes.

Mario Cesare Nurchis, Giorgio Sessa, Domenico Pascucci, Michele Sassano, Linda Lombi, Gianfranco Damiani.

  The global spread of diabetes poses serious threats to public health requiring a patient-centered approach based both on interprofessional collaboration (IPC) given by the cooperation of several different health professionals, and patients' perspective through the assessment of Patient-Reported Outcomes (PROs). The aim of the present study is to evaluate the impact of interprofessional collaboration interventions, for the management of type 2 diabetes in primary care settings, through PROs. A systematic review and meta-analysis was conducted querying the PubMed, Scopus and Embase databases. Out of the 1961 papers initially retrieved, 19 met the inclusion criteria. Interprofessional collaboration is significantly associated with an increase in both patient's satisfaction (SMD 0.32 95% CI 0.05-0.59) and in the mental well-being component of the HRQoL (SMD 0.18; 95% CI 0.06-0.30), and there was also promising evidence supporting the association between an interprofessional approach and an increase in self-care and in generic and specific quality-of-life. No statistical differences were found, supporting the positive impact on IPC interventions on the physical component of the HRQoL, depression, emotional distress, and self-efficacy. In conclusion, the effect of IPC impacts positively on the few areas assessed by PROMs. Policymakers should promote the widespread adoption of a collaborative approach as well as to endorse an active engagement of patients across the whole process of care.

Keywords:  interprofessional collaboration; patient-reported outcomes; primary care; type 2 diabetes

DOI:  https://doi.org/10.3390/jpm12040643
Health Expect. 2022 Apr 21.

Development and content validity of the Experienced Patient-Centeredness Questionnaire (EPAT)-A best practice example for generating patient-reported measures from qualitative data.

Eva Christalle, Stefan Zeh, Pola Hahlweg, Levente Kriston, Martin Härter, Jördis Zill, Isabelle Scholl.

  INTRODUCTION: To effectively foster patient-centeredness (PC), it is crucial to measure its implementation. So far, there is no German measure to assess PC comprehensively. The aim of this study is to develop and select items for the Experienced Patient-Centeredness (EPAT) Questionnaire, a patient-reported experience measure (PREM). The EPAT intends to assess PC from the perspective of adult patients treated for different chronic diseases in inpatient and outpatient settings in Germany. Furthermore, we aim at providing a best-practice example for developing PREMs from qualitative data.METHODS: The development process comprised a three-phase mixed-method design: (1) preparation, (2) item generation and (3) item selection and testing of content validity. We generated items using qualitative content analysis based on information from focus groups, key informant interviews and literature search. We selected items using relevance rating and cognitive interviews. Participants were patients from four chronic disease groups (cancer, cardiovascular disease, mental disorder, musculoskeletal disorder) and healthcare experts (e.g., clinicians, researchers, patient representatives).
RESULTS: We conducted six focus groups with a total of 40 patients, key informant interviews with 10 experts and identified 48 PREMs from international literature. After team discussion, we reached a preliminary pool of 152 items. We conducted a relevance rating with 32 experts and 34 cognitive interviews with 21 patients. We selected 125 items assessing 16 dimensions of PC and showed high relevance and comprehensibility.
CONCLUSIONS: The EPAT questionnaire is currently undergoing psychometric testing. The transparent step-by-step report provides a best practice example that other researchers may consider for developing PREMs. Integrating literature and experts with a strong focus on patient feedback ensured good content validity. The EPAT questionnaire will be helpful in assessing PC in routine clinical practice in inpatient and outpatient settings for research and quality improvement.
PATIENT OR PUBLIC CONTRIBUTION: Patients were not involved as active members of the research team. While developing the funding proposal, we informally reached out to several patient organizations who all gave us positive feedback on the study aims, thereby confirming their relevance. Those patient organizations endorsed the funding proposal with formal letters of support and supported recruitment by disseminating advertisements for study participation.

Keywords:  mixed methods; patient-centeredness; patient-reported experience measure; qualitative data; questionnaire development

DOI:  https://doi.org/10.1111/hex.13494
Patient Educ Couns. 2022 Apr 14. pii: S0738-3991(22)00147-1. [Epub ahead of print]

Exploring expectations and assumptions in the public and patient engagement literature: A meta-narrative review.

Susan Usher, Jean-Louis Denis.

  OBJECTIVES: Public and patient engagement (PPE) is increasingly recognized in policy statements as essential to achieving transformation towards patient-centred, value-based, integrated care. Despite extensive research over two decades, important gaps and questions remain around how the efforts invested in engagement drive the changes needed to meet these objectives.METHODS: We conducted a meta-narrative review of systematic and scoping reviews to understand persistent difficulties and uncertainties in this research domain. Thirty-eight reviews looking at studies of PPE in care, healthcare organizations and systems were appraised. We synthesized the expectations of PPE that prompted each review, the guiding ideas about how PPE comes about, main findings and the questions and gaps they raise.
RESULTS: Four storylines are found in reviews: 1. Terminology is inconsistent and concepts are weak; 2. Outcomes of care can be improved 3. Influence on healthcare delivery and design is uncertain; 4. Characteristics of engagement efforts are consequential.
DISCUSSION AND PRACTICE IMPLICATIONS: Three assumptions underlie these storylines and appear as barriers to practice and research; alternative approaches based on collaborative governance and theories of change are proposed to understand and support engagement with transformative potential.

Keywords:  Co-production; Collaborative health; Meta-narrative review; Patient engagement; Public engagement; Transformation

DOI:  https://doi.org/10.1016/j.pec.2022.04.001
J Pediatr Psychol. 2022 Apr 19. pii: jsac026. [Epub ahead of print]

Measuring PROMIS® Global Health in Early Childhood.

Michael A Kallen, Jin-Shei Lai, Courtney K Blackwell, Julia R Schuchard, Christopher B Forrest, Lauren S Wakschlag, David Cella.

  OBJECTIVE: Assessing general ("global") health is important to clinicians caring for patients, researchers studying patient subgroups, and epidemiologists tracking population trends. The Patient-Reported Outcomes Measurement Information System® (PROMIS®) introduced an adult self-report Global Health measure (ages 18+) in 2009 and pediatric versions (ages 5-17 years) in 2014. Our aim was to extend global health assessment to 1-5-year olds.METHODS: We used the PROMIS mixed-methods approach to develop PROMIS Early Childhood (EC) Global Health, emphasizing qualitative measure development guidance utilizing input from experts and parents. Quantitatively, we conducted two data collection waves with parents of 1-5-year olds and applied state-of-the-science measure development methods, including exploratory, confirmatory, and bi-factor analytics, particularly regarding potentially multi-dimensional Global Health item content. We conducted a series of hypothesis-based across-domain association analyses, which were more exploratory in nature, and known-groups validity analyses.
RESULTS: Experts emphasized the physical, mental, and social facets of global health, and parents described the broader, overarching construct. Using Waves 1 (N = 1,400) and 2 (N = 1,057) data, we retained six items directly sourced from the age 5-17 version and two new items. The resulting 8-item PROMIS EC Global Health was sufficiently unidimensional, so we fit item responses to the graded response model for parameter estimation. This produced an 8-item scale with one total score. Across-domain associations and known-groups validity analyses largely supported our hypotheses.
CONCLUSIONS: We achieved our aim to extend global health assessment to 1-5-year olds and to thereby expand the range of PROMIS life course global health assessment from children aged 1-17 years, to adults of all ages.

Keywords:  health promotion and prevention; infancy and early childhood; measure validation; preschool children; quality of life

DOI:  https://doi.org/10.1093/jpepsy/jsac026
J Biomed Inform. 2022 Apr 13. pii: S1532-0464(22)00087-9. [Epub ahead of print] 104071

Diagnosis clarification by generalization to patient-friendly terms and definitions: Validation study.

Hugo J T van Mens, Savine S M Martens, Elisabeth H M Paiman, Alexander C Mertens, Remko Nienhuis, Nicolette F de Keizer, Ronald Cornet.

  BACKGROUND: Now that patients increasingly get access to their healthcare records, its contents require clarification. The use of patient-friendly terms and definitions can help patients and their significant others understand their medical data. However, it is costly to make patient-friendly descriptions for the myriad of terms used in the medical domain. Furthermore, a description in more general terms, leaving out some of the details, might already be sufficient for a layperson. We developed an algorithm that employs the SNOMED CT hierarchy to generalize diagnoses to a limited set of concepts with patient-friendly terms for this purpose. However, generalization essentially implies loss of detail and might result in errors, hence these generalizations remain to be validated by clinicians. We aim to assess the medical validity of diagnosis clarification by generalization to concepts with patient-friendly terms and definitions in SNOMED CT. Furthermore, we aim to identify the characteristics that render clarifications invalid.RESULTS: Two raters identified errors in 12.7% (95% confidence interval - CI: 10.7-14.6%) of a random sample of 1,131 clarifications and they considered 14.3% (CI: 12.3-16.4%) of clarifications to be unacceptable to show to a patient. The intraclass correlation coefficient of the interrater reliability was 0.34 for correctness and 0.43 for acceptability. Errors were mostly related to the patient-friendly terms and definitions used in the clarifications themselves, but also to terminology mappings, terminology modelling, and the clarification algorithm. Clarifications considered to be most unacceptable were those that provide wrong information and might cause unnecessary worry.
CONCLUSIONS: We have identified problems in generalizing diagnoses to concepts with patient-friendly terms. Diagnosis generalization can be used to create a large amount of correct and acceptable clarifications, reusing patient-friendly terms and definitions across many medical concepts. However, the correctness and acceptability have a strong dependency on terminology mappings and modelling quality, as well as the quality of the terms and definitions themselves. Therefore, validation and quality improvement are required to prevent incorrect and unacceptable clarifications, before using the generalizations in practice.

Keywords:  Diagnoses; Health literacy; Patient access to records; Patient-friendly terminology; Personal health records; SNOMED CT

DOI:  https://doi.org/10.1016/j.jbi.2022.104071
Healthcare (Basel). 2022 Mar 30. pii: 647. [Epub ahead of print]10(4):

Co-Produce, Co-Design, Co-Create, or Co-Construct-Who Does It and How Is It Done in Chronic Disease Prevention? A Scoping Review.

Bronwyn McGill, Lucy Corbett, Anne C Grunseit, Michelle Irving, Blythe J O'Hara.

  Co-production in health literature has increased in recent years. Despite mounting interest, numerous terms are used to describe co-production. There is confusion regarding its use in health promotion and little evidence and guidance for using co-produced chronic disease prevention interventions in the general population. We conducted a scoping review to examine the research literature using co-production to develop and evaluate chronic disease prevention programs. We searched four electronic databases for articles using co-production for health behaviour change in smoking, physical activity, diet, and/or weight management. In 71 articles that reported using co-production, co-design, co-create, co-develop, and co-construct, these terms were used interchangeably to refer to a participatory process involving researchers, stakeholders, and end users of interventions. Overall, studies used co-production as a formative research process, including focus groups and interviews. Co-produced health promotion interventions were generally not well described or robustly evaluated, and the literature did not show whether co-produced interventions achieved better outcomes than those that were not. Uniform agreement on the meanings of these words would avoid confusion about their use, facilitating the development of a co-production framework for health promotion interventions. Doing so would allow practitioners and researchers to develop a shared understanding of the co-production process and how best to evaluate co-produced interventions.

Keywords:  chronic disease prevention; co-construct; co-design; co-produce; health promotion

DOI:  https://doi.org/10.3390/healthcare10040647
J Hosp Palliat Nurs. 2022 Apr 19.

Strategies to Understand What Matters to Advanced Cancer Patients in Advance Care Planning: A Qualitative Study Using the Lifeline Interview Method.

Sayaka Takenouchi, Ai Chikada, Masanori Mori, Keiko Tamura, Kazuko Nin.

Little is known about how health care providers should conduct advance care planning to identify the values of East Asian patients who have serious illnesses. This study aims to explore whether and how patients from an East Asian culture and with advanced cancer express their values and priorities when nurses utilize the lifeline interview method to enable patients to reflect on their life trajectories and if it can bridge advance care planning discussions. Data obtained from individual, semistructured interviews of 11 patients with advanced lung cancer were analyzed using qualitative content analysis. Seven main themes were identified: (1) treatment and essential elements to maintaining everyday life, (2) beliefs regarding and support for being "myself", (3) emotional ups and downs in response to physical condition, (4) competency to cope, (5) what I want to do "now" to achieve my goals, (6) goals that bring hope for life, and (7) wishes and preferences for end-of-life decision-making. Results suggest that the lifeline interview method is an excellent means for nurses and other health care professionals to elicit patients' values and priorities. Moreover, it bridges advance care planning discussions to reflect on what matters to patients in future palliative care.

DOI: https://doi.org/10.1097/NJH.0000000000000866
Int J Integr Care. 2022 Jan-Mar;22(1):22(1): 25

Improving In-Hospital Care For Older Adults: A Mixed Methods Study Protocol to Evaluate a System-Wide Sub-Acute Care Intervention in Canada.

Malcolm B Doupe, Jennifer E Enns, Sara Kreindler, Thekla Brunkert, Dan Chateau, Paul Beaudin, Gayle Halas, Alan Katz, Tara Stewart.

  Introduction: Acute care hospitals often inadequately prepare older adults to transition back to the community. Interventions that seek to improve this transition process are usually evaluated using healthcare use outcomes (e.g., hospital re-visit rates) only, and do not gather provider and patient perspectives about strategies to better integrate care. This protocol describes how we will use complementary research approaches to evaluate an in-hospital sub-acute care (SAC) intervention, designed to better prepare and transition older adults home.Methods: In three sequential research phases, we will assess (1) SAC transition pathways and effectiveness using administrative data, (2) provider fidelity to SAC core practices using chart audits, and (3) SAC implementation outcomes (e.g., facilitators and barriers to success, strategies to better integrate care) using provider and patient interviews.
Results: Findings from each phase will be combined to determine SAC effectiveness and efficiency; to assess intervention components and implementation processes that 'work' or require modification; and to identify provider and patient suggestions for improving care integration, both while patients are hospitalized and to some extent after they transition back home.
Discussion: This protocol helps to establish a blueprint for comprehensively evaluating interventions conducted in complex care settings using complementary research approaches and data sources.

Keywords:  administrative data; implementation measures; mixed methods; program evaluation; sub-acute care

DOI:  https://doi.org/10.5334/ijic.5953