scholarly journals Post-stroke fatigue: an exploratory study with patients and health professionals to develop a patient-reported outcome measure

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ingrid Johansen Skogestad ◽  
Marit Kirkevold ◽  
Petra Larsson ◽  
Christine Råheim Borge ◽  
Bent Indredavik ◽  
...  
Keyword(s):  
Future Development ◽  
Health Professionals ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Stroke Survivors ◽  
Structured Interviews ◽  
Post Stroke ◽  
Patient Reported Outcome Measure ◽  
Patient Reported ◽  
Initial Hospital

Abstract Background Post-stroke fatigue (PSF) is commonly reported and described as disabling by patients recovering from stroke. However, a major challenge is how to accurately diagnose and assess PSF. Therefore, the aim of this study was to explore PSF as it is experienced by stroke survivors and described by health professionals to guide future development of a PSF-specific PROM. Methods Individual semi-structured interviews were conducted with stroke survivors experiencing PSF (n = 9) and three focus groups were conducted with health professionals (n = 16). Data were analyzed through inductive content analysis. Results The analysis revealed four themes illustrating the experience and descriptions of PSF: 1) PSF characteristics, 2) interfering and aggravating factors, 3) management, and 4) PSF awareness, which refers to stroke survivors first becoming aware of PSF after their initial hospital admission. Conclusion This study highlights the complexity and multidimensionality of PSF. The results from this study will guide future development of a PSF-PROM and support its content validity.

Reproductive empowerment: The main motivator and outcome of carrier testing

2011 ◽  
Vol 17 (4) ◽  
pp. 567-578 ◽  
Author(s):  
Celine Lewis ◽  
Heather Skirton ◽  
Ray Jones
Keyword(s):  
Autosomal Recessive ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Information Gathering ◽  
Carrier Testing ◽  
Structured Interviews ◽  
Reproductive Risk ◽  
Chromosome Translocations ◽  
Patient Reported Outcome Measure ◽  
Patient Reported

The aim of this Grounded Theory study was to assess the motivation and outcomes of carrier testing. Qualitative semi-structured interviews were conducted with participants who had undergone carrier testing for autosomal recessive, X-linked conditions and chromosome translocations. Reproductive empowerment emerged as the central phenomenon. A desire to manage risk was the main motivator for carrier testing, and information gathering the main facilitator. Participants were then able to make informed decisions, regain control over their reproductive risk and pass on information to family members. These findings support a patient-reported outcome measure of empowerment currently being developed for genetic services.

OP141 A Patient-Reported Outcome Measure For Hemorrhoidal Disease

2018 ◽  
Vol 34 (S1) ◽  
pp. 51-52
Author(s):  
Robin van Tol ◽  
Merel Kimman ◽  
Jarno Melenhorst ◽  
Laurents Stassen ◽  
Stephanie Breukink ◽  
...  
Keyword(s):  
Health Professionals ◽  
Treatment Satisfaction ◽  
Outcome Measure ◽  
Treatment Effectiveness ◽  
Daily Life ◽  
Treatment Options ◽  
Patient Reported Outcome ◽  
Hemorrhoidal Disease ◽  
Patient Reported Outcome Measure ◽  
Patient Reported

Introduction:Treatment options for hemorrhoidal disease (HD) include conservative treatment (e.g. laxatives), rubber band ligation, and more invasive surgical treatment options. Outcomes reported in clinical trials evaluating treatment effectiveness are heterogeneous, making comparisons difficult. Moreover, clinical outcomes, such as recurrence, complications and symptoms, do not fully represent the relevant benefits and harms of treatment to the patient. We therefore developed (i) a core outcome set (COS) for HD treatment, and (ii) a patient-reported outcome measure (PROM) evaluating symptoms and impact on daily life.Methods:Literature review established outcomes most commonly used in studies evaluating HD treatment. A Delphi study with health professionals and patients was conducted to rank and discuss the outcomes in terms of importance and completeness, and reach consensus on a COS. In addition, individual patient interviews (n=15) were held to gain insight into patient experiences with HD and treatment. A panel of experts subsequently developed a PROM that focused on the core outcomes. Face and content validity were assessed (n=10) using a retrospective verbal probing technique.Results:Recurrent symptoms, complications and treatment satisfaction were the primary focus for health professionals, while patients were more concerned with overall impact on daily life. Patients ranked blood loss, pain and itching as the most bothersome symptoms. A PROM was developed, consisting of seven items covering three domains: severity of symptoms, impact on daily life, and treatment satisfaction (if applicable). The questions and response options were clear to patients and content validity was good. The questionnaire took approximately three minutes to complete.Conclusions:We developed a COS and a PROM for HD treatment. The PROM can be used in clinical trials as the primary outcome measure evaluating treatment effectiveness from the patient's perspective. It can also support shared decision-making regarding individual treatment pathways in clinical practice. A psychometric validation study is currently underway.

scholarly journals PRECiS (Patient Reported Evaluation of Cognitive State): psychometric evaluation of a new patient reported outcome measure of the impact of stroke

2016 ◽  
Vol 30 (12) ◽  
pp. 1229-1241 ◽  
Author(s):  
Emma Patchick ◽  
Andy Vail ◽  
Alison Wood ◽  
Audrey Bowen
Keyword(s):  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Cognitive State ◽  
Stroke Survivors ◽  
Patient Reported Outcome Measure ◽  
Patient Reported ◽  
Perceived Impact ◽  
Informal Carers ◽  
Test Retest Reliability ◽  
Cognitive Problems

Objective: Determine the psychometric properties of PRECiS (Patient Reported Evaluation of Cognitive State): A new patient-centred, patient reported outcome measure for perceived impact of cognitive problems, developed through qualitative work, systematic review and service user consultation. Design: An observational study exploring acceptability, internal consistency, construct validity, inter-rater reliability and test-retest reliability, with opportunistic qualitative data on sensitivity to change. Setting: Home visits in the community. Participants: Stroke survivors with self-reported cognitive difficulties and informal carers. Measures: The 27 item PRECiS was self-completed with support, and proxy completed by informal carers. We collected descriptive cognitive screening test data, and measures of overall stroke impact, mood and activities of daily living to explore construct validity. Results: Data were collected from 159 (visit 1) and 66 (visit 2) stroke survivors and 86 informal carers. PRECiS showed good acceptability (no missing values or floor/ceiling effects, minimal skewness); high internal consistency (α = 0.94, indicative of potential redundancy); with moderate to strong construct correlations in the directions hypothesised (0.40 to 0.74). An intraclass correlation coefficient of 0.85 indicated good test-retest reliability. Where self-reported change had occurred from visit 1 to 2, PRECiS appeared sensitive. Using carers as proxy respondents is not supported by this analysis (inter-rater ICC = 0.43). Conclusions: PRECiS is a patient-centred, practical and reliable measure assessing perceived impact of cognitive problems from the unique perspective of stroke survivors.

scholarly journals Establishing the acceptability of a brief patient reported outcome measure and feasibility of implementing it in a breast device registry – a qualitative study

2019 ◽  
Vol 3 (1) ◽  
Author(s):  
Sze Ng ◽  
Maggie Kirkman ◽  
Jane Fisher ◽  
Andrea Pusic ◽  
Emily Parker ◽  
...  
Keyword(s):  
Outcome Measure ◽  
Breast Implant ◽  
Breast Implants ◽  
Patient Reported Outcome ◽  
Emotional Reactions ◽  
Structured Interviews ◽  
Patient Reported Outcome Measure ◽  
Patient Reported ◽  
Group Variation ◽  
Potential Clinical Utility

Abstract Background To examine the acceptability of a Patient Reported Outcome Measure (PROM) that assesses perceptions and experiences of implants for breast reconstruction or augmentation, and the feasibility of implementing it in the Australian Breast Device Registry (ABDR). Methods The BREAST-Q Implant Surveillance (BREAST-Q IS) is a 5-question PROM derived from the BREAST-Q questionnaire. It assesses perceptions of breast appearance and sensation, and experiences of pain. Breast implant recipients (recruited via community networks, social media and notices in surgeons’ rooms) and surgeons contributing to the ABDR were invited to review the BREAST-Q-IS. Participation was by individual semi-structured interviews by telephone or email, or by completion of a paper questionnaire. Transcripts of audio recordings and emailed text were analysed thematically. Results Twenty one breast implant recipients (10 after reconstruction and 11 augmentation), 8 surgeons (five plastic, three breast) and 2 medical professionals performing cosmetic surgeries were interviewed. Six themes were identified: Overall impression, Emotional response to the BREAST-Q IS, Method of follow-up, Suggested improvements, Group variation, and Potential Clinical utility. Overall, breast implant recipients and surgeons found the BREAST-Q IS to be acceptable and unlikely to provoke strong emotional reactions. Email was the preferred mode of contact. Most suggested improvements were to add questions. Surgeons expressed concern that subjective responses to the PROM might not accurately reflect experiences and that the PROM would predict need for revision rather than device failure. Conclusion This study supports the acceptability and feasibility of BREAST-Q IS as a PROM for recipients of breast implants. Further validation of the Breast-Q IS is required.

Confirmatory Psychometric Evaluation of the Axillary Sweating Daily Diary: A Vaildated Patient-Reported Outcome Measure to Assess Axillary Hyperhidrosis Sweating Severity

2017 ◽  
Vol 1 ◽  
pp. s94 ◽  
Author(s):  
Dee Anna Glaser ◽  
Adelaide A Hebert ◽  
Sheri Fehnel ◽  
Dana DiBenedetti ◽  
Lauren Nelson ◽  
...  
Keyword(s):  
Outcome Measure ◽  
Daily Diary ◽  
Psychometric Evaluation ◽  
Patient Reported Outcome ◽  
Axillary Hyperhidrosis ◽  
Patient Reported Outcome Measure ◽  
Patient Reported

Abstract Not AvailableDisclosure: Study supported by Dermira.

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