scholarly journals What narrative devices do people with systemic sclerosis use to describe the experience of pain from digital ulcers: a multicentre focus group study at UK scleroderma centres

BMJ Open ◽  
2020 ◽  
Vol 10 (6) ◽  
pp. e037568
Author(s):  
Jennifer Jones ◽  
Michael Hughes ◽  
John Pauling ◽  
Rachael Gooberman-Hill ◽  
Andrew J Moore
Keyword(s):  
Systemic Sclerosis ◽  
Focus Group ◽  
Focus Groups ◽  
Patient Experience ◽  
Patient Reported Outcome ◽  
Digital Ulcers ◽  
Group Setting ◽  
Focus Group Study ◽  
Psychological Reactions ◽  
Patient Reported

ObjectivesDigital ulcers (DUs) are a common complication in systemic sclerosis (SSc). No existing studies have specifically reported on the qualitative patient experience of DU pain, and our current patient-reported outcome measure (PROM) does not capture the multifaceted painful experience of SSc-DU. Our aim was to examine the patient experience of SSc-DU pain.DesignFocus groups with people diagnosed with SSc who had experienced DUs were conducted using a topic guide developed by people with SSc, experts in SSc and experienced qualitative researchers. Focus groups were continued until data saturation had been reached. The focus groups were audio recorded, transcribed verbatim, anonymised and analysed using inductive thematic analysis. Our current study is an integration of the data from these focus groups to specifically examine the patient experience of DU pain.SettingThree specialist scleroderma units across the UK (Bath, Manchester and London).ParticipantsFour focus groups were undertaken; 29 adults (20 women, 9 men) with SSc and a spectrum of historical DUs participated. We included participants with a diverse demographic (including ethnic) background and disease-related characteristics.ResultsFive narrative devices were identified, which encompass how people describe the pain from SSc-DUs: ‘Words to express DU-associated pain’, ‘Descriptions of physical and psychological reactions to pain’, ‘Comparisons with other painful events’, ‘Descriptions of factors that exacerbate pain’ and ‘Descriptions of strategies for coping with the pain’.ConclusionThe experience of SSc-DU pain leads to the use of graphic language and rich description by participants in the focus group setting. Existing SSc-DU outcomes do not adequately capture the patient experiences of SSc-DU pain. Our findings further highlight the multifaceted nature of SSc-DUs and will hopefully support the development of a novel PROM to assess the severity and impact of SSc-DUs.

scholarly journals Practices and pitfalls in medication adherence in hemodialysis settings – a focus-group study of health care professionals

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Trine Mechta Nielsen ◽  
Nina Schjerning ◽  
Gudrun Kaldan ◽  
Mads Hornum ◽  
Bo Feldt-Rasmussen ◽  
...  
Keyword(s):  
Health Care ◽  
Medication Adherence ◽  
Focus Group ◽  
Health Care Professionals ◽  
Patient Adherence ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Focus Group Study ◽  
Patient Reported ◽  
The Impact

Abstract Background Medication nonadherence is common among patients with hemodialysis, leading to poorer patient outcomes. Health care professionals have an important role in assessing risk of nonadherence and intervening to support adherence. The aim of this study was to explore physicians’ and nurses’ current medication adherence practices in hemodialysis settings. Method A generic qualitative design with inductive content analysis and focus group methodology. Focus groups with health care professionals were conducted in four Nephrology Centers, representing three different regions of Denmark. An interview guide was developed in collaboration with 3 patient representatives. Results Six focus group interviews involving a total of forty-two health care professionals were conducted. Five main categories were identified; Laboratory tests are the “gold standard” for assessing adherence, suggesting that abnormal results motivated investigation of adherence, Varying practices for supporting adherence, alluding to the impact of individual clinician priority and preference on choice of adherence interventions, Unclear allocation of roles and responsibility, specifically referring to uncertainty in the delegation of roles between physicians and nurses, Navigating time and resource limitations, intimating the resources needed to support medication adherence and Suggestions for future strategies. Conclusions We suggest implementing systematic use of validated patient-reported outcome measures for assessing adherence and deprescribing tools to support adherence, as these instruments might identify the patients who are in most need of support and promote patient adherence to their prescribed medications. The findings also point to a need for interdisciplinary clarification of roles and responsibilities regarding medication adherence, with the aim of building a strong collaborative partnership between professions.

scholarly journals Psychometric validation of the Hand Disability in Systemic Sclerosis-Digital Ulcers (HDISS-DU®) patient-reported outcome instrument

2020 ◽  
Vol 22 (1) ◽  
Author(s):  
Luc Mouthon ◽  
Serge Poiraudeau ◽  
Margaret Vernon ◽  
Kelly Papadakis ◽  
Loïc Perchenet ◽  
...  
Keyword(s):  
Systemic Sclerosis ◽  
Construct Validity ◽  
Patient Reported Outcome ◽  
Measurement Properties ◽  
Digital Ulcers ◽  
Meaningful Change ◽  
Patient Reported ◽  
Psychometric Analyses ◽  
Hand Disability ◽  
Mean Differences

Abstract Background We aimed to develop a patient-reported outcome measure, in accordance with the US Food and Drug Administration guidance, to capture the impact of systemic sclerosis-related digital ulcers (SSc-DUs) on hand function. Psychometric analyses were conducted to evaluate and document the measurement properties of the resulting instrument—the Hand Disability in Systemic Sclerosis-Digital Ulcers (HDISS-DU®). Methods The HDISS-DU was developed through a series of confirmatory, qualitative concept-elicitation interviews (N = 36) to provide supportive evidence that the instrument captures all relevant issues and functional limitations relating to SSc-DUs in this patient population. Psychometric analyses used blinded data from two randomised, controlled, phase 3 trials in patients with SSc-DUs (N = 517). The analyses included assessment of reliability, construct validity, responsiveness and thresholds for meaningful change. Results Qualitative interviews confirmed that the HDISS-DU had good content coverage and patients understood the HDISS-DU instructions, items and response scale. The HDISS-DU demonstrated excellent internal consistency and test-retest reliability, with satisfactory construct validity. Overall, the HDISS-DU was highly responsive to change in digital ulcer severity: the no-change group (for other criterion measures) had mean differences and effect sizes close to 0, while mean differences were mostly negative (indicating improvement) for the improvement groups (for other criterion measures) and vice versa. The preliminary threshold for meaningful change was a 0.50 difference in HDISS-DU score. Conclusions Using data from two large studies of SSc-DU patients, these psychometric analyses support the reliability, validity, discriminating ability and responsiveness to change of the HDISS-DU for evaluating treatment outcomes in future clinical studies and clinical practice.

scholarly journals Understanding the patient experience in hepatocellular carcinoma: a qualitative patient interview study

2021 ◽  
Author(s):  
Nikunj Patel ◽  
Joshua Maher ◽  
Xandra Lie ◽  
Chad Gwaltney ◽  
Afsaneh Barzi ◽  
...  
Keyword(s):  
Hepatocellular Carcinoma ◽  
Drug Development ◽  
Conceptual Model ◽  
Patient Experience ◽  
Outcome Measurement ◽  
Qualitative Interviews ◽  
Patient Reported Outcome ◽  
Weight Changes ◽  
Patient Reported ◽  
Pro Instruments

Abstract Purpose This study aimed to elucidate the patient experience of hepatocellular carcinoma (HCC) to guide patient-centered outcome measurement in drug development. Methods Patients with HCC participated in qualitative interviews to elicit disease-related signs/symptoms and impacts, using discussion guides developed from literature searches and discussions with oncologists. Interview participants rated the disturbance of their experiences (0–10 scale). A conceptual model was developed and mapped against patient-reported outcome (PRO) instruments identified from database reviews. Results Interviews were conducted with 25 individuals with HCC (68% were men; median age: 63 years; 12% Barcelona clinic liver cancer (BCLC) stage A; 32% stage B; and 56% stage C) in the USA. Fifty-one HCC-related concepts were identified from the interviews and were grouped into eight sign/symptom categories (eating behavior/weight changes; extremities [arms, legs]; fatigue and strength; gastrointestinal; pain; sensory; skin; other) and four impact categories (emotional; physical; cognitive function; other) for the conceptual model. The most prevalent and disturbing experiences across the disease stages were fatigue/lack of energy and emotional impacts such as frustration, fear, and depression. Abdominal pain and skin-related issues were particularly common and disturbing in individuals with HCC stage C. The EORTC QLQ-C30 and HCC18 were identified as commonly used PRO instruments in HCC studies and captured the relevant signs/symptoms associated with the patient experience. Conclusion Patients with HCC reported a range of signs/symptoms and impacts that negatively affect daily functioning and quality of life. Including PRO measures in HCC clinical trials can provide meaningful patient perspectives during drug development.

scholarly journals Developing a recovery-focused therapy for older people with bipolar disorder: a qualitative focus group study

BMJ Open ◽  
2021 ◽  
Vol 11 (8) ◽  
pp. e049829
Author(s):  
Elizabeth Tyler ◽  
Fiona Lobban ◽  
Rita Long ◽  
Steven H Jones
Keyword(s):  
Older Adults ◽  
Bipolar Disorder ◽  
Focus Group ◽  
Older People ◽  
Focus Groups ◽  
Later Life ◽  
Focus Group Study ◽  
Age Related ◽  
Health Related ◽  
Age Related Changes

ObjectivesAs awareness of bipolar disorder (BD) increases and the world experiences a rapid ageing of the population, the number of people living with BD in later life is expected to rise substantially. There is no current evidence base for the effectiveness of psychological interventions for older adults with BD. This focus group study explored a number of topics to inform the development and delivery of a recovery-focused therapy (RfT) for older adults with BD.DesignA qualitative focus group study.SettingThree focus groups were conducted at a university in the North West of England.ParticipantsEight people took part in the focus groups; six older adults with BD, one carer and one friend.ResultsParticipant’s responses clustered into six themes: (1) health-related and age-related changes in later life, (2) the experience of BD in later life, (3) managing and coping with BD in later life, (4) recovery in later life, (5) seeking helping in the future and (6) adapting RfT for older people.ConclusionsParticipants reported a range of health-related and age-related changes and strategies to manage their BD. Participants held mixed views about using the term ‘recovery’ in later life. Participants were in agreement that certain adaptations were needed for delivering RfT for older adults, based on their experience of living with BD in later life. The data collected as part of the focus groups have led to a number of recommendations for delivering RfT for older adults with BD in a randomised controlled trial (Clinical Trial Registration: ISRCTN13875321).

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

2020 ◽  
Vol 5 (2_suppl) ◽  
pp. 48-60
Author(s):  
Lesley Ann Saketkoo ◽  
Mary Beth Scholand ◽  
Matthew R. Lammi ◽  
Anne-Marie Russell
Keyword(s):  
Clinical Practice ◽  
Systemic Sclerosis ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
Outcome Measures ◽  
Symptom Burden ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Science Methodology

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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