Patient perspectives on health care provider practices leading to an axial spondyloarthritis diagnosis: an exploratory qualitative research study

Abstract Background The average time to a diagnosis for people with axial spondyloarthritis (axSpA) is 7-10 years. Delayed diagnosis may result in increased structural damage, worse physical function, and worse quality of life relative to patients with a timely axSpA diagnosis. Understanding patient experiences may provide insights for how to reduce diagnostic delays. Objective To provide foundational knowledge about patient experiences with healthcare providers leading to an axSpA diagnosis. Methods We conducted an exploratory qualitative research study with six focus groups interviews with participants recruited from three rheumatology clinics within the United States (MA (n = 3); CO (n = 2); PA (n = 1)) that included a total of 26 adults (10 females, 16 males) with rheumatologist confirmed diagnosis of axSpA in 2019. Focus groups were ~ 2 h, audio recorded, transcribed, and subject to dual coding. The codes reviewed were in relation to the patients’ diagnostic experiences. Results Patients described frustrating and lengthy diagnostic journeys. They recognized that the causes of diagnostic delays in axSpA are multifactorial (e.g., no definitive diagnostic test, disease characteristics, lack of primary care provider’s awareness about axSpA, trust). Patients described how doctors minimized or dismissed complaints about symptoms or told them that their issues were psychosomatic. Patients believed the healthcare system contributed to diagnostic delays (e.g., lack of time in clinical visits, difficulty accessing rheumatologists, health insurance challenges). Advice to physicians to reduce the diagnostic delay included allowing time for patients to give a complete picture of their illness experience, listening to, and believing patients, earlier referral to rheumatology, provision of HLA-B27 gene testing, and that physicians need to partner with their patients. Conclusions Patients desire a definitive test that could be administered earlier in the course of axSpA. Until such a test is available, patients want clinicians who listen to, believe, and partner with them, and who will follow them until a diagnosis is reached. Educating primary care clinicians about guidelines and referral for diagnosis of axSpA could reduce diagnostic delay.

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Critical Issues in Career Development and Employment Preparation for Adolescents with Disabilities

Remedial and Special Education ◽

10.1177/074193259701800506 ◽

1997 ◽

Vol 18 (5) ◽

pp. 307-320 ◽

Cited By ~ 21

Author(s):

Mary E. Morningstar

Keyword(s):

Qualitative Research ◽

Career Development ◽

Focus Groups ◽

Students With Disabilities ◽

Research Study ◽

Career Planning ◽

Qualitative Research Study ◽

Successful Career ◽

Employment Preparation ◽

Critical Issues

This article examines critical issues facing educators who are concerned with preparing adolescents with disabilities to meet the challenges of successful career planning and employment. Two issues at the forefront of career development and employment preparation are discussed in light of the results from a qualitative research study that used interactive focus groups to examine the perspectives of students with disabilities about their experiences with career development and employment preparation. The data presented in this article focus specifically on students with disabilities and their perspectives regarding identification of careers and future employment and the role their families played in career development.

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Attitudes, barriers, and enablers towards conducting primary care research in Banda Aceh, Indonesia: a qualitative research study

Asia Pacific Family Medicine ◽

10.1186/s12930-018-0045-y ◽

2018 ◽

Vol 17 (1) ◽

Author(s):

Ichsan Ichsan ◽

Nur Wahyuniati ◽

Ryan McKee ◽

Louella Lobo ◽

Karla Lancaster ◽

...

Keyword(s):

Primary Care ◽

Qualitative Research ◽

Research Study ◽

Primary Care Research ◽

Qualitative Research Study ◽

Care Research ◽

Barriers And Enablers ◽

Banda Aceh

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How journalists shift toward engaging historically marginalized communities in the digital age

10.32469/10355/62028 ◽

2017 ◽

Author(s):

◽

Caroline Bauman

Keyword(s):

Qualitative Research ◽

Low Income ◽

Research Study ◽

New Technology ◽

The United States ◽

Text Messages ◽

Community Theatre ◽

Marginalized Communities ◽

Qualitative Research Study

The purpose of this study is to discover how and why journalists within nonprofit or startup newsrooms are changing routines to engage people who would not be typical or traditional readers. This qualitative research study shows how journalists are changing routines toward engaging historically marginalized communities through technology and creativity, such as utilizing text messages and community theatre as means of engagement. This study also reveals why those changes in routines matter as journalists link new routines in engagement to the long-term vitality of journalism. Mainstream journalisms history with marginalized communities -- defined in this study as low-income residents and minorities -- is not favorable, and current readership statistics reveal how damaging those trends have been for the industry. If journalists believe that news-consumption leads to more-informed people and to a better functioning democracy, then it is up to journalists to make the first move toward inviting untypical readers into the news-making process. Engaging historically marginalized communities can lead to a more stable financial future for journalism, and journalists interviewed in this study believe that engagement routines are a huge part of their role in democracy. Thanks to new technology and journalism models, there has never before been such vast opportunity to reimagine journalism in the United States and how news fits into the fabrics of individual lives.

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Creating Home for Students of Color: A Qualitative Study

in:cite journal ◽

10.33137/incite.2.32819 ◽

2019 ◽

Vol 2 ◽

pp. 58-65

Author(s):

Owen Setiawan

Keyword(s):

Qualitative Research ◽

Students Of Color ◽

Research Study ◽

The United States ◽

Diverse Populations ◽

Eighth Grader ◽

Qualitative Research Study ◽

Educational Spaces ◽

Personal Reflections ◽

Student Team

My name is Owen Setiawan, and I am an Indonesian-American eighth grader. This piece is a reflection on a qualitative research study I worked on with a group of students that investigated how school climates feel for middle, high school, and college students of color in the United States. After analyzing data from interviews and personal reflections from my student team, I then present the specific ways in which and reasons why students of color feel comfortable or uncomfortable in different educational settings. I conclude with recommendations for making educational spaces more welcoming and home-like for diverse populations.

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AB0892-HPR PATIENT PERSPECTIVES ON PROVIDER PRACTICES LEADING TO AN AXIAL SPONDYLOARTHRITIS DIAGNOSIS: A QUALITATIVE STUDY

Annals of the Rheumatic Diseases ◽

10.1136/annrheumdis-2021-eular.2749 ◽

2021 ◽

Vol 80 (Suppl 1) ◽

pp. 1469.2-1470

Author(s):

K. Lapane ◽

C. Dubé ◽

K. Ferrucci ◽

S. Khan ◽

K. A. Kuhn ◽

...

Keyword(s):

Back Pain ◽

Qualitative Study ◽

Focus Groups ◽

Chronic Back Pain ◽

Axial Spondyloarthritis ◽

Diagnostic Delay ◽

Primary Care Providers ◽

The United States ◽

Research Support ◽

The Impact

Background:People with Axial Spondyloarthritis (axSpA) experience a diagnostic delay between 7 to 10 years. (1-5) This delay contributes to increased depression and desperation in searching for an appropriate diagnosis. (6) Consequently, people with axSpA experience impaired physical function, structural damage, and overall worsened quality of life than those who experience a timely diagnosis. (7)Objectives:To gain knowledge and understand patients’ experiences with healthcare providers in diagnosis of axSpA.Methods:Using qualitative study design, we conducted six focus groups, with a total of 26 participants with a confirmed diagnosis of axSpA by rheumatologists from three different geographic locations: Worcester, MA, Aurora, CO and Philadelphia, PA. Focus groups were audio recorded and approximately 2 hours in duration. The focus groups were transcribed, deidentified, cleaned and stored in a secure location. NVivo software was used to code the data using a coding scheme which emerged from the focus group discussion topics. For intercoder reliability, two researchers coded the data and generated summary reports for data analysis.Results:Patients described their frustrating journeys to diagnosis and attributed the lengthy diagnosis delays to a multitude of factors. These elements include, lack of definitive diagnostic test, disease characteristics, lack of primary care providers’ awareness of axSpA, time, and trust. Patients felt that their physicians dismissed their complaints or would describe their symptoms as psychosomatic. The health care system also contributed to their diagnostic delays, including the lengthy referral process to a rheumatologist and the short clinical appointments. Patients believe that to reduce diagnostic delay, physicians must work with their patients; listening and believing their patients while allotting time for patients to discuss their experiences. In addition, patients believe earlier referral to a rheumatologist, and HLA-B27 genetic testing would decrease the diagnostic delay of axSpA.Conclusion:In this study, patients desire definitive testing in clinical practice for earlier diagnosis of axSpA. Additionally, more education regarding the guidelines to diagnose axSpA and earlier referral to rheumatologists might be needed. Until this is feasible, patients seek clinicians who will work with them until a diagnosis is made, listening, and believing their experiences and symptoms.References:[1]Deodhar A, Mease P, Reveille J, Curtis J, Karunaratne P, Malhotra K. Prevalence of axial spondyloarthritis among undiagnosed chronic back pain patients in the United States [abstract]. Ann Rheum Dis. 2014;73:198-199.[2]Deodhar A, Mease PJ, Reveille JD, et al. Frequency of Axial Spondyloarthritis Diagnosis Among Patients Seen by US Rheumatologists for Evaluation of Chronic Back Pain. Arthritis Rheumatol. 2016;68(2326-5205 (Electronic)):1669–1676.[3]Garrido-Cumbrera M, Poddubnyy D, Gossec L, et al. The European Map of Axial Spondyloarthritis: Capturing the Patient Perspective-an Analysis of 2846 Patients Across 13 Countries. Curr Rheumatol Rep. 2019;21(1534-6307 (Electronic)):19.[4]Redeker I, Callhoff J, Hoffmann F, et al. Determinants of diagnostic delay in axial spondyloarthritis: an analysis based on linked claims and patient-reported survey data. Rheumatology (Oxford) 2019;58(1462-0332 (Electronic)):1634–1638.[5]Strand V, Singh JA. Evaluation and Management of the Patient With Suspected Inflammatory Spine Disease. Mayo Clin Proc 2017;92(1942-5546 (Electronic)):555–564.[6]Martindale J. The impact of delay in diagnosing ankylosing spondylitis/axial SpA. . Rheumatology. 2014;53.[7]Yi EA-O, Ahuja A, Rajput T, George AT, Park Y. Clinical, Economic, and Humanistic Burden Associated With Delayed Diagnosis of Axial Spondyloarthritis: A Systematic Review. Rheumatol Ther 2020(2198-6576 (Print)):65-87.Disclosure of Interests:Kate Lapane: None declared, Catherine Dubé Grant/research support from: Novartis, as personnel on such studies, Katarina Ferrucci: None declared, Sara Khan: None declared, Kristine A. Kuhn Consultant of: UCB, Eli Lilly, Novartis, Grant/research support from: Pfizer, Alexis Ogdie Consultant of: Abbvie, Amgen, BMS, Celgene, Corrona, Gilead, Janssen, Lilly, Novartis, Pfizer, UCB, Grant/research support from: Pfizer to Penn, Novartis to Penn, Amgen to Forward/NDB, Esther Yi Employee of: Novartis Pharmaceuticals, Jonathan Kay Consultant of: AbbVie, Inc.; Boehringer Ingelheim GmbH; Celltrion Healthcare Co. Ltd.; Jubilant Radiopharma; Merck & Co.,Inc.; Pfizer Inc.; Samsung Bioepis; Sandoz Inc.; Scipher Medicine; UCB, Inc., Grant/research support from: (paid to UMass Medical School) Gilead Sciences Inc.; Novartis Pharmaceuticals Corp.; Pfizer Inc., Shao-Hsien Liu Grant/research support from: Novartis

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Experiences of primary care physicians managing postpartum care: a qualitative research study

BMC Family Practice ◽

10.1186/s12875-021-01494-w ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

Zhimin Poon ◽

Esther Cui Wei Lee ◽

Li Ping Ang ◽

Ngiap Chuan Tan

Keyword(s):

Primary Care ◽

Qualitative Research ◽

Healthcare System ◽

Primary Care Physicians ◽

Research Study ◽

Care Delivery ◽

Postpartum Care ◽

Physical And Mental Health ◽

Professional Relationship ◽

Qualitative Research Study

Abstract Background The postpartum period is redefined as 12 weeks following childbirth. Primary care physicians (PCP) often manage postpartum women in the community after uneventful childbirths. Postpartum care significantly impacts on the maternal and neonatal physical and mental health. However, evidence has revealed unmet needs in postpartum maternal care. Aim The study aimed to explore the experiences of PCPs in managing postpartum mothers. Methods Four focus group discussions and eleven in-depth interviews with twenty-nine PCPs were conducted in this qualitative research study in urban Singapore. PCPs of both gender and variable postgraduate training background were purposively enrolled. Audited transcripts were independently coded by two investigators. Thematic content analysis was performed using the codes to identify issues in the “clinician”, “mother”, “postpartum care” and “healthcare system & policy” domains stipulated in “The Generalists’ Wheel of Knowledge, Understanding and Inquiry” framework. Findings PCPs’ personal attributes such as gender and knowledge influenced their postpartum care delivery. Prior training, child caring experience and access to resource materials contributed to their information mastery of postpartum care. Their professional relationship with local multi-ethic and multi-lingual Asian mothers was impacted by their mutual communication, language compatibility and understanding of local confinement practices. Consultation time constraint, awareness of community postnatal services and inadequate handover of care from the specialists hindered PCPs in the healthcare system. Discussion Personal, maternal and healthcare system barriers currently prevent PCPs from delivering optimal postpartum care. Conclusion Interventions to overcome the barriers to improve postpartum care will likely be multi-faceted across domains discussed.

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Primary Care Physicians Managing Postpartum Care - What Are Their Barriers and Enablers? A Qualitative Research Study.

10.21203/rs.3.rs-393099/v1 ◽

2021 ◽

Author(s):

Zhimin Poon ◽

Esther Cui Wei Lee ◽

Li Ping Ang ◽

Ngiap Chuan Tan

Keyword(s):

Primary Care ◽

Qualitative Research ◽

Healthcare System ◽

Primary Care Physicians ◽

Research Study ◽

Care Delivery ◽

Postpartum Care ◽

Physical And Mental Health ◽

Professional Relationship ◽

Qualitative Research Study

Abstract BackgroundThe postpartum period is redefined as 12 weeks following childbirth. Primary care physicians (PCP) often manage postpartum women in the community after uneventful childbirths. Postpartum care significantly impacts on the maternal and neonatal physical and mental health. However, evidence has revealed unmet needs in postpartum maternal care. AimThe study aimed to explore the issues faced by PCPs in managing postpartum mothers. MethodsFour focus group discussions and eleven in-depth interviews with twenty-nine PCPs were conducted in this qualitative research study in urban Singapore. PCPs of both gender and variable postgraduate training background were purposively enrolled. Audited transcripts were independently coded by two investigators. Thematic content analysis was performed using the codes to identify issues in the “clinician”, “mother”, “postpartum care” and “healthcare system & policy” domains stipulated in “The Generalists’ Wheel of Knowledge, Understanding and Inquiry” framework.FindingsPCPs’ personal attributes such as gender and knowledge influenced their postpartum care delivery. Prior training, child caring experience and access to resource materials contributed to their information mastery of postpartum care. Their professional relationship with local multi-ethic and multi-lingual Asian mothers was impacted by their mutual communication, language compatibility and understanding of local confinement practices. Consultation time constraint, awareness of community postnatal services and inadequate handover of care from the specialists hindered PCPs in the healthcare system.DiscussionPersonal, maternal and healthcare system barriers currently prevent PCPs from delivering optimal postpartum care.ConclusionInterventions to overcome the barriers to improve postpartum care will likely be multi-faceted across domains discussed.

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