Qualitative Methods to Advance Care, Diagnosis, and Therapy in Rheumatic Diseases

Saketkoo, Lesley Ann; Pauling, John D

doi:10.1016/j.rdc.2018.01.004

Cited by 9 publications

(9 citation statements)

References 63 publications

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“…This highlights how the accuracy of symptom-related reporting may be influenced by attention to language as well as physical and psychological context. [13][14][15][16][17] The multi-organ system involvement of SSc, as well as medication side effects, creates diverse and overlapping coincident manifestations and symptoms in a person living with SSc. These complicate perceptions of anticipated pulmonary symptoms.…”

Section: Symptomatology Of Interest To Measure In Ssc-ildmentioning

confidence: 99%

“…We present seven overarching steps required to occur in robust PROM development ( 53,54 eliminates foundational steps and may not be sufficient to capture patient priorities and relevance to the particular disease experience. While PROMs with abbreviated development have utility in filling a care and research gap, optimal endpoint performance with robust methodology for patient content 16,55 remain an important concern especially for diseases like SSc-ILD that present assessment challenges.…”

Section: Path To Prom Developmentmentioning

confidence: 99%

“…28,77 The UCSD-SOBQ, a quick 24-item instrument with short question stems of 1-3 words and a 6-point response scale, has demonstrated validity in ILDs including SSc-ILD 78,79 and IPF. 65 Its psychometric soundness presumes the ease of comprehension and the contextualization demonstrated to be important in patient communication of dyspnea [14][15][16][17] ; however, it is unknown if contextualization of physical activities in the UCSD-SOBQ is confounded by systemic and musculoskeletal symptoms. Contextualization, though useful, can be highly personal.…”

Section: Proms Of Interest In Ssc-ildmentioning

confidence: 99%

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Patient-reported outcome measures in systemic sclerosis–related interstitial lung disease for clinical practice and clinical trials

Saketkoo¹,

Scholand

Lammi

et al. 2020

Journal of Scleroderma and Related Disorders

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Systemic sclerosis (SSc) is a progressive vasculopathic, fibrosing autoimmune condition, portending significant mortality; wherein interstitial lung disease (ILD) is the leading cause of death. Although lacking a definitive cure, therapeutics for (SSc-ILD) that stave progression exist with further promising primary and adjuvant compounds in development, as well as interventions to reduce symptom burden and increase quality of life. To date, there has been a significant but varied history related to systemic sclerosis–related interstitial lung disease trial design and endpoint designation. This is especially true of endpoints measuring patient-reported perceptions of efficacy and tolerability. This article describes the underpinnings and complexity of the science, methodology, and current state of patient-reported outcome measures used in (SSc-ILD) systemic sclerosis–related interstitial lung disease in clinical practice and trials.

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Section: Symptomatology Of Interest To Measure In Ssc-ildmentioning

confidence: 99%

Section: Path To Prom Developmentmentioning

confidence: 99%

Section: Proms Of Interest In Ssc-ildmentioning

confidence: 99%

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Patient-reported outcome measures in systemic sclerosis–related interstitial lung disease for clinical practice and clinical trials

Saketkoo¹,

Scholand

Lammi

et al. 2020

Journal of Scleroderma and Related Disorders

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“…Background: Juvenile idiopathic arthritis (JIA) is a heterogeneous group of diseases characterized by unknown origin arthritis that begins before the age of 16 years (1). Therefore, families are often affected by the disease of children.…”

mentioning

confidence: 99%

“…Background: Studies show that patients' biopsychosocial characteristics may be affected by various factors such as inpatient, outpatients, exercise intervention regularly. [1]. No studies have been found to examine this situation in the literature.…”

mentioning

confidence: 99%

Ab1373-Hpr biopsychosocial Characteristics of Inpatients, Outpatients and Patients Who Attend a Group Exercise Sessions Regularly

Aslıyüce¹,

Özçadırcı²,

Arın³

et al. 2019

HPR Interventions (Educational, Physical, Social and Psychological)

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BackgroundStudies show that patients’ biopsychosocial characteristics may be affected by various factors such as inpatient, outpatients, exercise intervention regularly. [1]. No studies have been found to examine this situation in the literature.ObjectivesThe aim of this study was to investigate the biopsychosocial characteristics of patients with rheumatic diseases who were inpatients, outpatients and participated in an exercise intervention regularly.MethodsA total of 105 patients were included in the study (inpatient, outpatient, exercise intervention) (Table 1). For exercise intervention group, BETY as a biopsychosocial exercise model was applied 3 days a week for 3 months [2]. Biopsychosocial characteristics of the patients included in the study were evaluated by BETY- Biopsychosocial Questionnaire (BETY-BQ) [3]. In addition to the total score of BETY-BQ, the same time pain, functionality and fatigue, sexuality, emotional status and socialization subcategory of this questionnaire were evaluated on item basis among each patients.ResultsThe demographics variables and BETY-BQ scores of the patients were shown in Table 1. There were a statistically significant differences among three groups. After post-hoc analysis, it was determined that there is no difference between the BETY-BQ scores of the outpatients and inpatients (p> 0.05), whereas the BETY-BQ scores of the patients who participated in the group exercise were lower (p<0.05). When the items were analyzed, it was found that pain (items 2, 3, 5, and 12), functionality and fatigue (items 6, 7, 11, 26, and 28), emotional status (items 16 and 17), and sleep (item 30) subcategory scores were also lower in patients who participated in BETY programme (p<0.05).Abstract Table 1 Demographic statistics and BETY-BQ scores Inpatient (n= 30) Outpatıent (n= 44) Exercıse ınterventıon (BETY) (n= 31) Female Male Female Male Female Male Gender (%) 61.337.887.212.853.77.4 XSD XSD XSD Age (year) 46.3514.5646.0613.2648.67 11.89 BMI (kg/m2) 24.19 5.1728.98 18.8526.94 3.84 BETY-BQ (0- 120) p XSD XSD XSD 0.027 49.1017.9445.6427.9333.8121.73ConclusionIt is surprising that the biopsychosocial characteristics of the inpatients and outpatients were similar. According to this result, inpatients shouldnt be thought as worse than outpatients. On the other hand, the patients who participated in exercise intervention were improved in terms of biopsychosocial aspects. The positive effects of the BETY program on the biopsychosocial status of individuals have been demonstrated formerly [4]. It was concluded that inpatients should be supported to exercise in terms of their biopsychosocial needs during hospitalization period as well as rheumatic outpatients need.References[1] Saketkoo, L.A. and J.D. Pauling, Qualitative methods to advance care, diagnosis, and therapy in rheumatic diseases. Rheumatic Disease Clinics of North America, 2018.[2] Kisacik, P., et al., Investigating the effects of a multidimensional exercise program on symptoms and antiinflammatory status in female pa...

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Balancing COVID‐19 Risk With Physical and Mental Wellness: Perspectives of Patients With Autoimmune Rheumatic Diseases Throughout the Pandemic

Rapoport,

Wells,

Torres

et al. 2023

ACR Open Rheumatology

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Objective Patients with autoimmune rheumatic diseases (ARDs) are at greater risk of COVID‐19 infection and hospitalization, increasing the stress and uncertainty already associated with unpredictable conditions. These may be heightened for patients with ARDs from underrepresented minority backgrounds. This study aimed to explore patient experiences and ARD‐related challenges during the first year of the pandemic. Methods Between December 2020 and May 2021, 60‐minute semistructured interviews were conducted with English‐ and Spanish‐speaking adults, aged 18 years or older with self‐reported diagnosis of ARD, via phone or videoconferencing using an interview guide on living with an ARD during the pandemic. Analysis combined methods of phenomenology and content analysis through three steps: 1) summarizing interviews, 2) iteratively refining units of meaning, and 3) axial and selective coding to determine cross‐cutting themes. Study procedures were conducted by a multidisciplinary team, a majority also diagnosed with ARDs. Results The research team interviewed 22 patients (39.8 ± 15.7 years old; 82.8% female; 31.8% Hispanic or Latino/a/x) with ARDs. Themes included 1) information access and understanding, 2) problem solving access to health care, 3) balancing risks, and 4) mental health implications. Within these themes, patients from underrepresented minority backgrounds faced unique challenges. Conclusion Patients with ARDs require direct and timely communication about their risk of COVID‐19 morbidity and mortality and require increased support for psychosocial and ARD‐related implications of the pandemic. Health care systems must consider ways to support patients who are balancing chronic disease management with risk reduction for contracting emerging COVID‐19 variants.

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Qualitative Methods to Advance Care, Diagnosis, and Therapy in Rheumatic Diseases

Cited by 9 publications

References 63 publications

Patient-reported outcome measures in systemic sclerosis–related interstitial lung disease for clinical practice and clinical trials

Patient-reported outcome measures in systemic sclerosis–related interstitial lung disease for clinical practice and clinical trials

Ab1373-Hpr biopsychosocial Characteristics of Inpatients, Outpatients and Patients Who Attend a Group Exercise Sessions Regularly

Balancing COVID‐19 Risk With Physical and Mental Wellness: Perspectives of Patients With Autoimmune Rheumatic Diseases Throughout the Pandemic

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