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Research on Patient-Centered Care

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A special issue of International Journal of Environmental Research and Public Health (ISSN 1660-4601). This special issue belongs to the section "Health Care Sciences & Services".

Deadline for manuscript submissions: closed (24 March 2023) | Viewed by 14406

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Special Issue Editors

Dr. Sarah Bigi

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Guest Editor

Department of Linguistic Sciences and Foreign Literatures, Catholic University of the Sacred Heart, 20123 Milan, Italy
Interests: healthcare communication; medical argumentation; discourse analysis; shared decision making

Dr. Maria Grazia Rossi

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Guest Editor

Nova Institute of Philosophy (IFILNOVA), Faculty of Social and Human Sciences, Nova University of Lisbon, 1099-032 Lisbon, Portugal
Interests: patient-provider communication; medical argumentation; metaphors; misunderstandings & problems of understanding; reasoning & emotions

Special Issue Information

Dear Colleagues,

Patient-centered care is the practice of caring for patients (and their families) in ways that are meaningful and valuable to the individual patient. Patient-centered care (PCC) was developed in response to the acknowledged limitations of the biomedical tradition and is now the primary model of care in many countries. The goal of PCC is the implementation of procedures and relational styles that integrate patients’ perspectives and preferences in the process of care. In this way, patients are encouraged to manage their own health and quality of life, thus improving their physical and social well-being and satisfaction with care. However, PCC also increases personal and financial costs, excludes certain groups, and diminishes the value of the staff as autonomous persons, which in turn might result in poor working conditions and high turnover rates. In this respect, PCC may seem to challenge sustainability; at the same time, it seems to integrate some of the ingredients that might help to move in the direction of a value-based healthcare. At a practical level, it may turn out to be sometimes difficult to decide which behavior is more ‘patient-centered’ than others.

The goal of this Special Issue is to explore the newest research on PCC in order to highlight both strong and weak aspects of this paradigm of care. We welcome papers on PCC provided by researchers from around the world and from diverse disciplines.

Dr. Sarah Bigi
Dr. Maria Grazia Rossi
Guest Editors

Manuscript Submission Information

Manuscripts should be submitted online at www.mdpi.com by registering and logging in to this website. Once you are registered, click here to go to the submission form. Manuscripts can be submitted until the deadline. All submissions that pass pre-check are peer-reviewed. Accepted papers will be published continuously in the journal (as soon as accepted) and will be listed together on the special issue website. Research articles, review articles as well as short communications are invited. For planned papers, a title and short abstract (about 100 words) can be sent to the Editorial Office for announcement on this website.

Submitted manuscripts should not have been published previously, nor be under consideration for publication elsewhere (except conference proceedings papers). All manuscripts are thoroughly refereed through a single-blind peer-review process. A guide for authors and other relevant information for submission of manuscripts is available on the Instructions for Authors page. International Journal of Environmental Research and Public Health is an international peer-reviewed open access monthly journal published by MDPI.

Please visit the Instructions for Authors page before submitting a manuscript. The Article Processing Charge (APC) for publication in this open access journal is 2500 CHF (Swiss Francs). Submitted papers should be well formatted and use good English. Authors may use MDPI's English editing service prior to publication or during author revisions.

Keywords

patient-centered care
decision making
value-based healthcare
patient satisfaction
provider–patient relations
measurement
communication
public health

Published Papers (7 papers)

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Research

11 pages, 614 KiB

Open AccessArticle

Facilitators and Barriers to a Hospital-Based Communication Skills Training Programme: An Interview Study

by Maiken Wolderslund, Karin Waidtløw, Poul-Erik Kofoed and Jette Ammentorp

Int. J. Environ. Res. Public Health 2023, 20(6), 4834; https://doi.org/10.3390/ijerph20064834 - 9 Mar 2023

Viewed by 1649

Abstract

This study aimed to investigate the facilitators and barriers experienced by the department management (DMs) and communication skills trainers (trainers) during the implementation of a 3-day communication skills training (CST) programme for healthcare professionals (HCPs). Thus, we conducted semi-structured interviews with 23 DMs and 10 trainers from 11 departments concurrently implementing the CST programme. Thematic analysis was undertaken to elucidate the themes across the interviews. Five themes were developed: resource consumption; obstacles; management support; efforts and outcomes; and a lack of systematic follow-up. Although the DMs and trainers were largely in agreement, the theme of a lack of systematic follow-up was derived exclusively from the trainers, as were two of the subthemes within obstacles: (b) seniority, profession, and cultural differences, and (c) the trainers’ competencies. The greatest perceived barrier was resource consumption. In addition, DMs found planning and staff resistance to be a challenge. However, the HCPs’ resistance diminished or even changed to satisfaction after participating. The mandatory approach served as both a facilitator and a barrier; DMs’ support was an essential facilitator. Explicit communication related to resource demands, planning, and participation is crucial, as is management support and the allocation of resources. Full article

(This article belongs to the Special Issue Research on Patient-Centered Care)

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13 pages, 348 KiB

Open AccessArticle

Patient Experiences and Perspectives of Their Decision-Making to Accept Lung Transplantation Referral: A Qualitative Study

by Mengjie Chen, Xueqiong Zou, Jiang Nan, Baiyila Nuerdawulieti, Xiahere Huxitaer and Yuyu Jiang

Int. J. Environ. Res. Public Health 2023, 20(5), 4599; https://doi.org/10.3390/ijerph20054599 - 5 Mar 2023

Viewed by 1246

Abstract

Providing early lung transplantation referral services should be considered to reduce pre-transplant mortality in patients with advanced disease. This study aimed to explore the reasons for lung transplantation referral decisions in patients and provide evidence for the development of transplantation referral services. This was a qualitative, retrospective, and descriptive study involving conventional content analysis. Patients in evaluation, listing, and post-transplant stages were interviewed. A total of 35 participants (25 male and 10 female) were interviewed. Four main themes were defined: (1) expectations for lung transplantation leading to the decision (a gamble for a silver lining, a return to normal life, and occupation); (2) facing uncertain outcomes (personal luck arranging everything; belief in success; incidents leading to “It’s decided then”; hesitation when making a decision due to fear); (3) facing various information from peers, doctors, and so on; (4) complex policy and societal support (providing transplantation referral services earlier, family attachment and oral approval responses contribute to the referral decision, and so on). The findings of this study might enrich existing referral services, including training for family members and healthcare providers, a checklist and package of critical events in the patient lung transplantation referral decision-making process, precision services based on behavioral personas, and a curriculum to enhance patient decision self-efficacy. Full article

(This article belongs to the Special Issue Research on Patient-Centered Care)

17 pages, 2910 KiB

Open AccessArticle

A Community-Based Participatory Framework to Co-Develop Patient Education Materials (PEMs) for Rare Diseases: A Model Transferable across Diseases

by Marta Falcão, Mariateresa Allocca, Ana Sofia Rodrigues, Pedro Granjo, Rita Francisco, Carlota Pascoal, Maria Grazia Rossi, Dorinda Marques-da-Silva, Salvador C. M. Magrinho, Jaak Jaeken, Larisa Aragon Castro, Cláudia de Freitas, Paula A. Videira, Luísa de Andrés-Aguayo and Vanessa dos Reis Ferreira

Int. J. Environ. Res. Public Health 2023, 20(2), 968; https://doi.org/10.3390/ijerph20020968 - 5 Jan 2023

Cited by 3 | Viewed by 2288

Abstract

At least 50% of chronic disease patients don’t follow their care plans, leading to lower health outcomes and higher medical costs. Providing Patient Education Materials (PEMs) to individuals living with a disease can help to overcome these problems. PEMs are especially beneficial for people suffering from multisystemic and underrecognized diseases, such as rare diseases. Congenital disorders of glycosylation (CDG) are ultra-rare diseases, where a need was identified for PEMs in plain language that can clearly explain complex information. Community involvement in the design of PEMs is extremely important for diseases whose needs are underserved, such as rare diseases; however, attempts to involve lay and professional stakeholders are lacking. This paper presents a community-based participatory framework to co-create PEMs for CDG, that is transferable to other diseases. A literature review and questionnaire were performed, and only four articles describing the development of PEMS for rare diseases have been found, which demonstrates a lack of standardized approaches. The framework and PEMs were co-developed with CDG families and will be crucial in increasing health literacy and empowering families. We will close a gap in the creation of PEMs for CDG by delivering these resources in lay language in several languages. Full article

(This article belongs to the Special Issue Research on Patient-Centered Care)

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12 pages, 850 KiB

Open AccessArticle

The Influence of Patient-Centered Communication on Children’s Anxiety and Use of Anesthesia for MR

by M. Conceição Castro, Isabel Ramos and Irene Palmares Carvalho

Int. J. Environ. Res. Public Health 2023, 20(1), 414; https://doi.org/10.3390/ijerph20010414 - 27 Dec 2022

Cited by 1 | Viewed by 1682

Abstract

Background: The aim of this study was to inspect the influence of patient-centered communication (PCC) with 4- to 10-year-old children on the use of anesthesia for magnetic resonance imaging exams (MRs). Methods: A total of thirty children received the PCC and pre-simulated the exam with an MR toy. Another 30 children received routine information about the MR and pre-simulated the exam with the toy. Anesthesia use in these two groups was additionally compared with a previously existing group of children (n = 30) who had received only routine information about the exam (CG). Children’s anxiety was assessed with a self-report question plus heartbeat frequency. Children’s satisfaction was assessed through several questions. The analyses were based on group comparisons and regression. Results: A total of two children (7%) in the PCC + simulation group used sedation compared with 14 (47%) in the simulation group and 21 (70%) in the CG. Differences between the PCC + simulation and the other two groups were significant (p < 0.001), although not between the simulation and the CG. The decrease in anxiety was significantly greater (self-reported p < 0.001; heart rate p < 0.05) and satisfaction was higher (p = 0.001) in the PCC + simulation, when compared with the simulation group. Reduced anxiety was associated with less anesthesia use (OR 1.39; CI 1.07–1.79; p = 0.013). Conclusions: PCC + simulation was more effective than simulation and routine practice in decreasing children’s anxiety, increasing satisfaction, and reducing the use of anesthesia for MRs. Full article

(This article belongs to the Special Issue Research on Patient-Centered Care)

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13 pages, 2765 KiB

Open AccessArticle

A Participatory Framework for Plain Language Clinical Management Guideline Development

by Rita Francisco, Susana Alves, Catarina Gomes, Pedro Granjo, Carlota Pascoal, Sandra Brasil, Alice Neves, Inês Santos, Andrea Miller, Donna Krasnewich, Eva Morava, Christina Lam, Jaak Jaeken, Paula A. Videira and Vanessa dos Reis Ferreira

Int. J. Environ. Res. Public Health 2022, 19(20), 13506; https://doi.org/10.3390/ijerph192013506 - 19 Oct 2022

Cited by 2 | Viewed by 1734

Abstract

Background: Clinical management guidelines (CMGs) are decision support tools for patient care used by professionals, patients, and family caregivers. Since clinical experts develop numerous CMGs, their technical language hinders comprehension and access by nonmedical stakeholders. Additionally, the views of affected individuals and their families are often not incorporated into treatment guidelines. We developed an adequate methodology for addressing the needs and preferences of family and professional stakeholders regarding CMGs, a recently developed protocol for managing congenital disorders of glycosylation (CDG), a family of rare metabolic diseases. We used the CDG community and phosphomannomutase 2 (PMM2)-CDG CMGs as a pilot to test and implement our methodology. Results: We listened to 89 PMM2-CDG families and 35 professional stakeholders and quantified their CMG-related needs and preferences through an electronic questionnaire. Most families and professionals rated CMGs as relevant (86.5% and 94.3%, respectively), and valuable (84.3% and 94.3%, respectively) in CDG management. The most identified challenges were the lack of CMG awareness (50.6% of families) and the lack of plain language CMG (39.3% of professionals). Concordantly, among families, the most suggested solution was involving them in CMG development (55.1%), while professionals proposed adapting CMGs to include plain language (71.4%). Based on these results, a participatory framework built upon health literacy principles was created to improve CMG comprehension and accessibility. The outputs are six complementary CMG-related resources differentially adapted to the CDG community’s needs and preferences, with a plain language PMM2-CDG CMG as the primary outcome. Additionally, the participants established a distribution plan to ensure wider access to all resources. Conclusions: This empowering, people-centric methodology accelerates CMG development and accessibility to all stakeholders, ultimately improving the quality of life of individuals living with a specific condition and raising the possibility of application to other clinical guidelines. Full article

(This article belongs to the Special Issue Research on Patient-Centered Care)

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16 pages, 403 KiB

Open AccessArticle

Benefits and Risks of Sharing Genomic Data for Research: Comparing the Views of Rare Disease Patients, Informal Carers and Healthcare Professionals

by Mariana Amorim, Susana Silva, Helena Machado, Elisa Leão Teles, Maria João Baptista, Tiago Maia, Ngozi Nwebonyi and Cláudia de Freitas

Int. J. Environ. Res. Public Health 2022, 19(14), 8788; https://doi.org/10.3390/ijerph19148788 - 19 Jul 2022

Cited by 3 | Viewed by 2081

Abstract

Assessing public and patients’ expectations and concerns about genomic data sharing is essential to promote adequate data governance and engagement in rare diseases genomics research. This cross-sectional study compared the views of 159 rare disease patients, 478 informal carers and 63 healthcare professionals in Northern Portugal about the benefits and risks of sharing genomic data for research, and its associated factors. The three participant groups expressed significantly different views. The majority of patients (84.3%) and informal carers (87.4%) selected the discovery of a cure for untreatable diseases as the most important benefit. In contrast, most healthcare professionals revealed a preference for the development of new drugs and treatments (71.4%), which was the second most selected benefit by carers (48.3%), especially by the more educated (OR (95% CI): 1.58 (1.07–2.34)). Lack of security and control over information access and the extraction of information exceeding research objectives were the two most often selected risks by patients (72.6% and 50.3%, respectively) and carers (60.0% and 60.6%, respectively). Conversely, professionals were concerned with genomic data being used to discriminate citizens (68.3%), followed by the extraction of information exceeding research objectives (54.0%). The latter risk was more frequently expressed by more educated carers (OR (95% CI): 1.60 (1.06–2.41)) and less by those with blue-collar (OR (95% CI): 0.44 (0.25–0.77) and other occupations (OR (95% CI): 0.44 (0.26–0.74)). Developing communication strategies and consent approaches tailored to participants’ expectations and needs can benefit the inclusiveness of genomics research that is key for patient-centred care. Full article

(This article belongs to the Special Issue Research on Patient-Centered Care)

19 pages, 2962 KiB

Open AccessArticle

A Community-Led Approach as a Guide to Overcome Challenges for Therapy Research in Congenital Disorders of Glycosylation

by Rita Francisco, Sandra Brasil, Carlota Pascoal, Andrew C. Edmondson, Jaak Jaeken, Paula A. Videira, Cláudia de Freitas, Vanessa dos Reis Ferreira and Dorinda Marques-da-Silva

Int. J. Environ. Res. Public Health 2022, 19(11), 6829; https://doi.org/10.3390/ijerph19116829 - 2 Jun 2022

Cited by 2 | Viewed by 2194

Abstract

Congenital Disorders of Glycosylation (CDG) are a large family of rare genetic diseases for which effective therapies are almost nonexistent. To better understand the reasons behind this, to analyze ongoing therapy research and development (R&D) for CDG, and to provide future guidance, a community-led mixed methods approach was organized during the 4th World Conference on CDG for Families and Professionals. In the quantitative phase, electronic surveys pointed to the prioritization of six therapeutic R&D tools, namely biobanks, registries, biomarkers, disease models, natural history studies, and clinical trials. Subsequently, in the qualitative phase, the challenges and solutions associated with these research tools were explored through community-driven think tanks. The multiple challenges and solutions identified administrative/regulatory, communication, financial, technical, and biological issues, which are directly related to three fundamental aspects of therapy R&D, namely data, sample, and patient management. An interdependence was traced between the prioritized tools, with diagnosis and therapies acting as bidirectional triggers that fuel these interrelationships. In conclusion, this study’s pioneering and adaptable community-led methodology identified several CDG therapy R&D gaps, many common to other rare diseases, without easy solutions. However, the strong proactive attitude towards research, based on inclusive and international partnerships and involving all members of the CDG community, sets the direction for better future therapy R&D. Full article

(This article belongs to the Special Issue Research on Patient-Centered Care)

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