scholarly journals Patients’ and healthcare professionals’ perspectives on the idiopathic pulmonary fibrosis care journey: a qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Anouk Delameillieure ◽  
Fabienne Dobbels ◽  
Sarah Vandekerkhof ◽  
Wim A. Wuyts
Keyword(s):  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Integrated Care ◽  
Healthcare Professionals ◽  
Care Delivery ◽  
Care Program ◽  
Management Support ◽  
Continuous Training ◽  
Patient Reported ◽  
Centre Of Excellence

Abstract Background Idiopathic pulmonary fibrosis (IPF) highly impacts patients on several life dimensions and challenges healthcare practices in providing high-quality care. Consequently, it is crucial to establish integrated care processes, maximizing patient value and patients’ individual needs. The aim of the study was to shed light on the care trajectory based on the perspectives of patients and healthcare professionals. Methods The study was conducted at a tertiary Belgian IPF centre of excellence. We conducted individual interviews with patients and healthcare professionals, guided by the Chronic Care Model (CCM) as a framework for integrated care. Thematic analysis was used to underpin data analysis. Results Experiences were gathered of nine patients with IPF (aged 57–83 years, of which the informal caregivers were present at five interviews) and nine professionals involved in the IPF care trajectory. Our findings identified pitfalls and suggestions for improvement covering all elements of the CCM, primarily at the level of the individual patient and the care team. We covered suggestions to improve the team-based care and pro-active follow-up of patients’ needs. Self-management support was highlighted as an important area and we identified possibilities, but also challenges regarding the use of patient-reported outcomes and eHealth-tools. Furthermore, the importance of continuous training for professionals and the implementation of guidelines in routine care was pointed out. Also, participants mentioned an opportunity to collaborate with community-based organizations and raised challenges regarding the overall health system. Lastly, the pertaining lack of IPF awareness and the disease burden on patients and their caregivers were covered. Conclusions Our research team has initiated a project aiming to optimize the current care delivery practice for IPF patients at a Belgian centre of excellence. These results will inform the further optimisation of the care program and the development of feasible supportive interventions.

scholarly journals Care programs and their components for patients with idiopathic pulmonary fibrosis: a systematic review

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Anouk Delameillieure ◽  
Sarah Vandekerkhof ◽  
Bastiaan Van Grootven ◽  
Wim A. Wuyts ◽  
Fabienne Dobbels
Keyword(s):  
Systematic Review ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Integrated Care ◽  
Clinical Care ◽  
Multidisciplinary Care ◽  
Models Of Care ◽  
Management Support ◽  
Care Needs ◽  
Care Models

Abstract Background The multidimensional and complex care needs of patients with idiopathic pulmonary fibrosis (IPF) call for appropriate care models. This systematic review aimed to identify care models or components thereof that have been developed for patients with IPF in the outpatient clinical care, to describe their characteristics from the perspective of chronic integrated care and to describe their outcomes. Methods A systematic review was conducted using state-of-the-art methodology with searches in PubMed/Medline, Embase, CINAHL and Web Of Science. Researchers independently selected studies and collected data, which were described according to the Chronic Care Model (CCM). Results Eighteen articles were included describing 13 new care models or components. The most commonly described CCM elements were ‘delivery system design’ (77%) and ‘self-management support’ (69%), with emphasis on team-based and multidisciplinary care provision and education. The most frequently described outcome was health-related quality of life. Conclusions Given the high need for integrated care and the scarcity and heterogeneity of data, developing, evaluating and implementing new models of care for patients with IPF and the comprehensive reporting of these endeavours should be a priority for research and clinical care.

scholarly journals Patients’ and healthcare professionals’ perceptions of self-management support interactions: Systematic review and qualitative synthesis

2017 ◽  
Vol 14 (2) ◽  
pp. 79-103 ◽  
Author(s):  
Marika Franklin ◽  
Sophie Lewis ◽  
Karen Willis ◽  
Helen Bourke-Taylor ◽  
Lorraine Smith
Keyword(s):  
Systematic Review ◽  
Healthcare Professionals ◽  
Care Delivery ◽  
Individual Responsibility ◽  
Self Management ◽  
Chronic Obstructive ◽  
Traditional Model ◽  
Management Support ◽  
Model Of Care ◽  
Qualitative Synthesis

Objective To review studies examining the experience of self-management support in patient–provider interactions and the shaping of goals through interactions. Methods We undertook a systematic review and thematic synthesis of the qualitative literature. We searched six databases (2004–2015) for published studies on the provision of self-management support in one-to-one, face-to-face, patient–provider interactions for obesity, type 2 diabetes mellitus and chronic obstructive pulmonary disease, with 14 articles meeting inclusion criteria. Results Themes identified from studies were (1) dominance of a traditional model of care, encompassing the provision of generic information, exclusion of the psychosocial and temporal nature of interactions and (2) a context of individual responsibility and accountability, encompassing self-management as patients’ responsibility and adherence, accountability and the attribution of blame. Interactions were constrained by consultation times, patient self-blame and guilt, desire for autonomy and beliefs about what constitutes ‘effective’ self-management. Discussion Encounters were oriented towards a traditional model of care delivery and this limited opportunity for collaboration. These findings suggest that healthcare professionals remain in a position of authority, limiting opportunities for control to be shared with patients and shared understandings of social context to be developed.

scholarly journals Knowledgeability, Attitude and Practice Behaviors of Dental Providers Toward Provisions of Integrated Care Delivery for Patients With Prediabetes/Diabetes: Wisconsin Statewide Survey

2021 ◽  
Vol 2 ◽  
Author(s):  
Neel Shimpi ◽  
Aloksagar Panny ◽  
Ingrid Glurich ◽  
Po-Huang Chyou ◽  
Amit Acharya
Keyword(s):  
Integrated Care ◽  
Dental Treatment ◽  
Care Delivery ◽  
Insurance Coverage ◽  
Current Status ◽  
Dental Hygienists ◽  
Time Investment ◽  
Practice Behaviors ◽  
Patient Reported ◽  
Dental Providers

Introduction: To conduct a statewide survey among Wisconsin-based dental providers evaluating current knowledgeability, attitudes and practice behaviors surrounding management of patients with diabetes/prediabetes in the dental setting. The study explored perceptions on feasibility, value, barriers, and current status of integrated care model (ICM) adoption by dental practicesMaterials and Methods: A 32-question paper-based survey was mailed to all licensed dentists and dental hygienists practicing in Wisconsin. The study was conducted over a 4 week period in 2019. The survey instrument was adapted from a previous validated survey and was expanded to include questions on ICM adoption. Content and validity analyses and beta testing were conducted prior to dissemination of the survey. Descriptive statistics and chi-square tests were applied for data analyses. Thematic analyses was performed on open-ended questions.Results: Survey response rate was 12% (N = 854/7,356) representing 41% dentists and 59% dental hygienists. While 68% reported educating patients on oral health-diabetes association, only 18% reported medical consultations to inform dental treatment, and “frequent” (22%) or “occasional” (40%), medical triage. Knowledge-based questions were correctly answered by >70% of participants. While 50% valued chair-side glycemic screening and 85% supported non-invasive chair-side screening to identify at-risk patients,>88% relied on patient-reported diabetic status. Barriers to ICM adoption included time investment (70%), patient activation/cooperation (62%), cost (50%), insurance coverage (50%), infrequent interdisciplinary communication (46%), lack of equipment (33%) and provider (31%).Conclusion: Low rates of ICM adoption, chair-side testing, medical consultation and triage, and need for educational curricula reform were identified.

scholarly journals Comparison of Palliative Care Models in Idiopathic Pulmonary Fibrosis

2021 ◽  
Vol 11 (19) ◽  
pp. 9028
Author(s):  
Sarah Younus ◽  
Jeffrey A. Bakal ◽  
Janice Richman-Eisenstat ◽  
Ghadah Alrehaili ◽  
Sharina Aldhaheri ◽  
...  
Keyword(s):  
Palliative Care ◽  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Symptom Management ◽  
Care Delivery ◽  
Referral Criteria ◽  
Location Of Death ◽  
Specialist Referral ◽  
Care Models ◽  
Eol Care

Introduction: Palliative care (PC) is recommended in idiopathic pulmonary fibrosis (IPF) patients but poorly implemented. Integration of PC into routine management by pulmonologists may improve overall and end-of-life (EOL) care, but the optimal model of PC delivery is unknown. Objective: To describe three PC care delivery models and their impact on EOL; the Multidisciplinary Collaborative ILD clinic, Edmonton, Canada (EC) and the Bristol ILD Service, UK (BC) that provide primary level PC; and the Queen’s University ILD Clinic, Kingston, Canada (QC), which refers IPF patients to a specialist PC Clinic using specific referral criteria. Methods: A multicenter retrospective observational study of IPF patients receiving care in the identified clinics (2012–2018) was designed. Demographics; PC delivery, including symptom management; advance care planning (ACP); and location of death data were examined. Results: 298 IPF patients were included (EC 95, BC 84, and QC 119). Median age was 71 years with 74% males. Overall, 63% (188) patients received PC. Primary PC approach in EC and BC led to more patients receiving PC (98% EC, 94% BC and 13% QC (p < 0.001/<0.001)) with earlier initiation compared to QC. Associated higher rates of non-pharmacologic dyspnea management [98% EC, 94% BC, and 2% QC (p < 0.001/<0.001); opioids (45% EC and BC, and 23% QC (p < 0.001/<0.001)); and ACP (100% EC and BC, and 13% QC patients (p < 0.001/<0.001))] were observed. Median follow up (IQR) was 16 months (5–28) with 122 deaths (41%). Primary PC model in EC and BC decedents was associated with more PC delivery (91% EC, 92% BC and 19% QC (p < 0.001)) with more symptoms management, oxygen, and opiate use than QC (p < 0.001; p = 0.04; p = 0.01). EOL discussions occurred in 73% EC, 63% BC, and 4% QC decedents (p = 0.001). Fifty-nine% (57) died at home or hospice and 38% (36) in hospitals. Concordance rate between preferred and actual location of death was 58% in EC (0.29 (−0.02–0.51)) and 37% in BC models (−0.11 (−0.20–0.15)). Conclusions: Primary PC approach for IPF is feasible in ILD clinics with concurrent disease management and can improve access to symptom management, ACP, PC and EOL care. Reliance on PC specialist referral for PC initiation outside of the ILD clinic can result in delayed care.

scholarly journals P276 Development of patient reported experience measure (PREM) for idiopathic pulmonary fibrosis (IPF)

Thorax ◽  
2016 ◽  
Vol 71 (Suppl 3) ◽  
pp. A238.1-A238 ◽  
Author(s):  
AM Russell ◽  
S Sonecha ◽  
A Datta ◽  
R Hewitt ◽  
I Howell ◽  
...  
Keyword(s):  
Idiopathic Pulmonary Fibrosis ◽  
Pulmonary Fibrosis ◽  
Patient Reported ◽  
Experience Measure
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