المؤلفون: Toor, Tiffany, Palyo, Sarah, Schopmeyer, Kathryn, Simmons, Alan N, Strigo, Irina A

المصدر: Journal of Patient-Reported Outcomes. 8(1)

مصطلحات موضوعية: Allied Health and Rehabilitation Science, Biomedical and Clinical Sciences, Clinical Sciences, Health Sciences, Aging, Clinical Research, Chronic Pain, Pain Research, Behavioral and Social Science, 7.1 Individual care needs, Management of diseases and conditions, Musculoskeletal, Good Health and Well Being, Humans, Motivation, Veterans, Pain Management, Treatment Outcome, Pain, Chronic pain, Fitbit, Wearable electronic devices, Treatment satisfaction, Patient satisfaction, Pain treatment, Veteran, Biomedical and clinical sciences, Health sciences

الوصف: ObjectiveThis study compares clinical pain outcomes between patients in a pain treatment program that received a Fitbit, to patients that did not. We also explored: (1) cognitive, emotional, and psychological factors that may have impacted the decision to opt in to receiving a Fitbit; and (2) whether the choice to receive a Fitbit impacted changes in cognitive, emotional, and psychological factors following treatment.MethodsAmong 58 patients in a multidisciplinary pain treatment program at a Veterans Affairs Healthcare System hospital, 31 patients opted to receive a Fitbit as adjunct treatment, while 27 did not. This study utilized patient-reported and practitioner-collected data from the pain treatment program.ResultsCompared to the non-Fitbit group, the Fitbit group displayed a significant decrease in average pain intensity, however showed no correlation between Fitbit activity and average pain intensity. Additionally, treatment satisfaction was the only predictor of treatment group, when modeling pre- and post-treatment outcomes changes.ConclusionThe implementation of a Fitbit may lead to improved pain intensity. Initial evidence suggests that opting to receive a Fitbit during a pain treatment program indicates treatment engagement leading to greater treatment satisfaction. Future work is needed to verify and expand upon this potential mechanism.

وصف الملف: application/pdf

الوصول الحر: https://escholarship.org/uc/item/5ps6p018Test

المؤلفون: Tanner, Caroline M, Caroff, Stanley N, Cutler, Andrew J, Lenderking, William R, Shalhoub, Huda, Pagé, Véronique, Franey, Ericha G, Serbin, Michael, Yonan, Chuck

المصدر: Journal of Patient-Reported Outcomes. 7(1)

مصطلحات موضوعية: Biomedical and Clinical Sciences, Clinical Research, Brain Disorders, 7.1 Individual care needs, Management of diseases and conditions, Good Health and Well Being, Humans, Tardive Dyskinesia, Antipsychotic Agents, Quality of Life, Social Interaction, Outpatients, Tardive dyskinesia, Quality of life, Function, Real-world evidence, Antipsychotic agents, Biomedical and clinical sciences, Health sciences

الوصف: BackgroundTardive dyskinesia (TD) is a persistent and potentially disabling movement disorder associated with antipsychotic use. Data from RE-KINECT, a real-world study of antipsychotic-treated outpatients, were analyzed to assess the effects of possible TD on patient health and social functioning.MethodsAnalyses were conducted in Cohort 1 (patients with no abnormal involuntary movements) and Cohort 2 (patients with possible TD per clinician judgment). Assessments included: EuroQoL's EQ-5D-5L utility (health); Sheehan Disability Scale (SDS) total score (social functioning); patient- and clinician-rated severity of possible TD ("none", "some", "a lot"); and patient-rated impact of possible TD ("none", "some", "a lot"). Regression models were used to analyze the following: associations between higher (worse) severity/impact scores and lower (worse) EQ-5D-5L utility (indicated by negative regression coefficients); and associations between higher (worse) severity/impact scores and higher (worse) SDS total score (indicated by positive regression coefficients).ResultsIn Cohort 2 patients who were aware of their abnormal movements, patient-rated TD impact was highly and significantly associated with EQ-5D-5L utility (regression coefficient: - 0.023, P

وصف الملف: application/pdf

الوصول الحر: https://escholarship.org/uc/item/5688d5spTest

المؤلفون: Davis, Jonathan, Olazo, Kristan, Sierra, Maribel, Tarver, Michelle E, Caldwell, Brittany, Saha, Anindita, Lisker, Sarah, Lyles, Courtney, Sarkar, Urmimala

المصدر: Journal of Patient-Reported Outcomes. 6(1)

مصطلحات موضوعية: Cardiovascular, Basic Behavioral and Social Science, Heart Disease, Clinical Research, Behavioral and Social Science, Management of diseases and conditions, 7.1 Individual care needs, Good Health and Well Being, Heart failure, Qualitative research, Outcomes research

الوصف: BackgroundThe Kansas City Cardiomyopathy Questionnaire (KCCQ) is a Patient-Reported Outcome Measure (PROM) used to evaluate the health status of patients with heart failure (HF) but has predominantly been tested in settings serving predominately white, male, and economically well-resourced populations. We sought to examine the acceptability of the shorter version of the KCCQ (KCCQ-12) among racially and ethnically diverse patients receiving care in an urban, safety-net setting.MethodsWe conducted cognitive interviews with a diverse population of patients with heart failure in a safety net system to assess their perceptions of the KCCQ-12. We conducted a thematic analysis of the qualitative data then mapped themes to the Capability, Opportunity, Motivation Model of Behavior framework.ResultsWe interviewed 18 patients with heart failure and found that patients broadly endorsed the concepts of the KCCQ-12 with minor suggestions to improve the instrument's content and appearance. Although patients accepted the KCCQ-12, we found that the instrument did not adequately measure aspects of health care and quality of life that patients identified as being important components of managing their heart failure. Patient-important factors of heart failure management coalesced into three main themes: social support, health care environment, and mental health.ConclusionsPatients from this diverse, low-income, majority non-white population experience unique challenges and circumstances that impact their ability to manage disease. In this study, patients were receptive to the KCCQ-12 as a tool but perceived that it did not adequately capture key health components such as mental health and social relationships that deeply impact their ability to manage HF. Further study on the incorporation of social determinants of health into PROMs could make them more useful tools in evaluating and managing HF in diverse, underserved populations.

وصف الملف: application/pdf

الوصول الحر: https://escholarship.org/uc/item/8pj4h4gzTest

المؤلفون: Maria Samuelsson, Anne Wennick, Mariette Bengtsson, Marie-Louise Lydrup, Jenny Jakobsson

المصدر: Journal of Patient-Reported Outcomes, Vol 7, Iss 1, Pp 1-13 (2023)

مصطلحات موضوعية: Colorectal cancer, Caregivers, Cognitive interviews, Family members, Psychometrics, Supportive care needs, Public aspects of medicine, RA1-1270

الوصف: Abstract Background Colorectal cancer is the third most common cancer diagnosis globally and is increasing in both incidence and prevalence. Despite evidence showing that family members of persons diagnosed with cancer have supportive care needs, no validated questionnaire measuring the needs of family members of persons diagnosed with CRC exists in Swedish. Thus, the objective of the present study was to translate, culturally adapt, and evaluate the psychometric properties the Supportive Care Needs Survey – Partners and Caregivers 45. Methods The translation and cultural adaptation followed a systematic yet iterative process. Firstly, the questionnaire was translated using a forward–backward approach. Secondly, face and content validity and comprehensibility were evaluated by two expert panels of colorectal cancer specialist nurses and family members, respectively. Lastly, the psychometric properties, validity, and reliability of the translated questionnaire were evaluated among 45 Swedish family members of persons diagnosed with colorectal cancer. Results The face, content, and construct validity of the translated questionnaire were evaluated as satisfying. Moreover, psychometric evaluations showed high data quality and satisfactory internal consistency. However, the results also revealed unsolved issues regarding relevance, targeting, and internal consistency, as well as a probable scaling failure. Conclusion The translated and adapted questionnaire can be used to identify family members unmet needs of support throughout the colorectal cancer trajectory. The questionnaire showed promising validity and reliability in the target population. However, it needs to be further evaluated in a larger sample, preferably involving factor analysis and stability over time.

وصف الملف: electronic resource

العلاقة: https://doaj.org/toc/2509-8020Test

الوصول الحر: https://doaj.org/article/0397b5a99cd94277843b2674d6daa20aTest

المؤلفون: Skogestad, Ingrid Johansen, Kirkevold, Marit, Larsson, Petra, Borge, Christine Råheim, Indredavik, Bent, Gay, Caryl L, Lerdal, Anners

المصدر: Journal of Patient-Reported Outcomes. 5(1)

مصطلحات موضوعية: Health Services and Systems, Nursing, Health Sciences, Clinical Research, Stroke, Neurosciences, Brain Disorders, Rehabilitation, 7.1 Individual care needs, Management of diseases and conditions, Fatigue, Qualitative research, Patient-reported outcome measure, Biomedical and clinical sciences, Health sciences

الوصف: BackgroundPost-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.MethodsIndividual 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.ResultsThe 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.ConclusionThis 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.

وصف الملف: application/pdf

الوصول الحر: https://escholarship.org/uc/item/7n44k4kzTest

المؤلفون: Carolyn C. Foster, Courtney K. Blackwell, Kristin Kan, Luis Morales, David Cella, Sara Shaunfield

المصدر: Journal of Patient-Reported Outcomes, Vol 7, Iss 1, Pp 1-12 (2023)

مصطلحات موضوعية: Self-efficacy, Patient-reported outcome measure, Children with special health care needs, Children with medical complexity, Children with disability, Public aspects of medicine, RA1-1270

الوصف: Plain English Summary Self-efficacy, which is someone’s confidence in completing a task, is important for managing a chronic health condition. Knowing parents’ self-efficacy managing their children’s health conditions may be an important step in supporting their children’s health but no single measure is available for diverse sets of conditions. In this paper, we present the development of a new patient reported outcomes measure designed to assess self-efficacy of parents managing their child’s chronic and/or disabling conditions. We found that the measure is both acceptable and understandable to English and Spanish speakers and may be useful to proactively identify parents in need of additional supports at hospital discharge or at the time of a new diagnosis.

وصف الملف: electronic resource

العلاقة: https://doaj.org/toc/2509-8020Test

الوصول الحر: https://doaj.org/article/0b6eacb814f64983bff73d13400359c1Test

المؤلفون: Samuelsson, Maria, 1982, Wennick, Anne, 1968, Bengtsson, Mariette, docent, 1957, Lydrup, Marie-Louise, Jakobsson, Jenny, 1975

المصدر: Journal of Patient-Reported Outcomes. 7(1)

مصطلحات موضوعية: Colorectal cancer, Caregivers, Cognitive interviews, Family members, Psychometrics, Supportive care needs, Translation, Unmet needs, Validity, Questionnaire

الوصف: Background: Colorectal cancer is the third most common cancer diagnosis globally and is increasing in both incidence and prevalence. Despite evidence showing that family members of persons diagnosed with cancer have supportive care needs, no validated questionnaire measuring the needs of family members of persons diagnosed with CRC exists in Swedish. Thus, the objective of the present study was to translate, culturally adapt, and evaluate the psychometric properties the Supportive Care Needs Survey - Partners and Caregivers 45.Methods: The translation and cultural adaptation followed a systematic yet iterative process. Firstly, the questionnaire was translated using a forward-backward approach. Secondly, face and content validity and comprehensibility were evaluated by two expert panels of colorectal cancer specialist nurses and family members, respectively. Lastly, the psychometric properties, validity, and reliability of the translated questionnaire were evaluated among 45 Swedish family members of persons diagnosed with colorectal cancer.Results: The face, content, and construct validity of the translated questionnaire were evaluated as satisfying. Moreover, psychometric evaluations showed high data quality and satisfactory internal consistency. However, the results also revealed unsolved issues regarding relevance, targeting, and internal consistency, as well as a probable scaling failure.Conclusion: The translated and adapted questionnaire can be used to identify family members unmet needs of support throughout the colorectal cancer trajectory. The questionnaire showed promising validity and reliability in the target population. However, it needs to be further evaluated in a larger sample, preferably involving factor analysis and stability over time.Plain language summary: Colorectal cancer is the third most common cancer diagnose globally. At times of cancer, also the health and wellbeing of the surrounding family members is negatively affected. As a result, family members of persons diagnosed with cancer report that they too need support. Still, no validated questionnaire that enable measurement of family members needs of support throughout the colorectal cancer trajectory existed in Swedish. Thus, the present study undertook the process of translation of a questionnaire from English to Swedish. Thereto, evaluated it among Swedish family members of persons diagnosed with colorectal cancer. The evaluation showed a successful translation and the translated questionnaire appeared reliable and useful for measuring the family members´ needs of support throughout the colorectal cancer trajectory. However, it requires further evaluation.

وصف الملف: electronic

الوصول الحر: https://urn.kb.se/resolve?urn=urn:nbn:se:mau:diva-63502Test
https://doi.org/10.1186/s41687-023-00636-1Test
https://mau.diva-portal.org/smash/get/diva2:1810228/FULLTEXT01.pdfTest

المؤلفون: Aldhouse, Natalie VJ, Kitchen, Helen, Knight, Sarah, Macey, Jake, Nunes, Fabio P, Dutronc, Yves, Mesinkovska, Natasha, Ko, Justin M, King, Brett A, Wyrwich, Kathleen W

المصدر: Journal of Patient-Reported Outcomes. 4(1)

مصطلحات موضوعية: Depression, Clinical Research, Behavioral and Social Science, Mind and Body, Mental Health, Management of diseases and conditions, 7.1 Individual care needs, Good Health and Well Being, Alopecia areata, Quality of life, Psychosocial, Qualitative, Health-related quality of life, Conceptual model

الوصف: BackgroundAlopecia areata (AA) is characterized by hair loss that can affect the scalp and body. This study describes the psychosocial burden of AA.MethodsParticipants diagnosed with AA who had experienced ≥50% scalp hair loss according to the Severity of Alopecia Tool (SALT) were identified by clinicians. A semi-structured interview guide, developed with expert clinician input, included open-ended questions to explore patients' experiences of living with AA. Data were thematically analyzed to identify concepts and relationships.ResultsParticipants (n = 45, 58% female, mean age 33.3 years [range 15-72], mean SALT 67.2 [range 0-100]) described the AA diagnosis as "devastating". Both males and females reported emotional and psychological impacts of AA including feeling sad/depressed (n = 21), embarrassed/ashamed (n = 10) and angry/frustrated (n = 3). Patients felt helpless (n = 5) due to the unpredictability of disease recurrence, and anxious (n = 19) about judgement from others. Many patients avoided social situations (n = 18), which impaired relationships and increased isolation. Coping strategies included concealment of hair loss through wigs or make-up, although fear of the displacement of these coverings also caused anxiety and the avoidance of activities that could result in scalp exposure (n = 22). Some patients became more accepting of AA over time, which lessened the emotional impact, though efficacious treatment was still desired. A conceptual framework was developed, and a conceptual model was created to depict the relationship between the physical signs/symptoms and the associated psychosocial effects of AA.ConclusionAA impairs patients' emotional and psychological wellbeing, relationships and lifestyles. Greater disease awareness and effective treatments are needed.

وصف الملف: application/pdf

الوصول الحر: https://escholarship.org/uc/item/1376m32bTest

المؤلفون: Lerdal, Anners, Hofoss, Dag, Gay, Caryl L, Fagermoen, May Solveig

المصدر: Journal of Patient-Reported Outcomes. 3(1)

مصطلحات موضوعية: Health Services and Systems, Health Sciences, Behavioral and Social Science, Clinical Research, Cardiovascular, Heart Disease, Management of diseases and conditions, 7.1 Individual care needs, Mental health, Good Health and Well Being, Illness perception, Heart failure, Depression, Anxiety, Quality of life, Functioning, Biomedical and clinical sciences, Health sciences

الوصف: PurposeTo explore the relationship between illness perceptions and self-reported general health of patients with chronic heart disease, using some core elements from the Common Sense Model.MethodsPatients with heart failure (New York Heart Association [NYHA] Functional Class I-III) from five outpatient clinics in Eastern Norway were invited to participate in this cross-sectional study. Two research nurses collected socio-demographic data (age, sex, education and work status) and standardized questionnaires in structured interviews. Patients' self-reported general health was measured with the Euro-Qual Visual Analogue Scale (EQ-VAS), illness perceptions were measured with the 8-item Brief Illness Perception Questionnaire (BIPQ), and mood was assessed using the Hospital Anxiety and Depression Scale.ResultsAmong the 220 patients who were recruited into this study (98% response rate), the mean age was 67.5 years (SD ± 12.5), and 65.9% were men. Patients were classified as NYHA Class I (8.7% with no activity limitations), Class II (47.6% with slight limitations), or Class III (43.8% with marked limitations). Mean EQ-VAS score was 58.8 (SD ± 21.0). Three of the eight perception of illness items (consequences, personal control and identity) were associated with the patients' general health rating, controlling for their NYHA Class, mood and other BIPQ items.ConclusionsOur findings suggest that patients' perceptions of their illness have an independent and substantial relationship to the self-rated general health of patients with chronic heart failure. Peoples' illness perceptions are beliefs that have been shown to be modifiable in clinical interventions. Thus, targeted interventions aimed to modify these, such as patient education courses, ought to be developed and tested, as they may be helpful for improving perceived health status.

وصف الملف: application/pdf

الوصول الحر: https://escholarship.org/uc/item/6c93c991Test

المؤلفون: Maida, Carl A, Marcus, Marvin, Hays, Ron D, Coulter, Ian D, Ramos-Gomez, Francisco, Lee, Steve Y, McClory, Patricia S, Van, Laura V, Wang, Yan, Shen, Jie, Lau, Bryant, Spolsky, Vladimir W, Crall, James J, Liu, Honghu

المصدر: Journal of patient-reported outcomes. 2(1)

مصطلحات موضوعية: Child and adolescent oral health, Outcomes, Psychosocial aspects of oral health, Qualitative research, Clinical Research, Mental Health, Behavioral and Social Science, Chronic Pain, Pediatric Research Initiative, Dental/Oral and Craniofacial Disease, Pediatric, Pain Research, Basic Behavioral and Social Science, 7.1 Individual care needs, 2.3 Psychological, social and economic factors, Oral and Gastrointestinal

الوصف: Background:Parents' perceptions of their 8-17-year-old children's oral health status were assessed using a sample from diverse dental clinics in Greater Los Angeles County to identify constructs for a survey instrument. Methods:Focus groups with 29 parents or guardians were conducted to identify themes that informed development of survey items. The draft items were administered to a different group of 32 parents or guardians in cognitive interviews, and revised for subsequent field-testing. Results:Thematic and narrative analyses were performed after the focus groups and key lay-oriented dimensions were uncovered, notably the relationship between oral health, systemic health and the life course. In the cognitive interviews, parents entered multiple responses to questions related to the look of their child's teeth, and their overall perception of tooth color. Parents also assessed their child's fear or discomfort with the dental experience, and other social and psychological concerns related to oral health status. The temporal dimensions of certain items were specified; for example, oral pain and mood items were revised to include duration of the symptom or mood state. As parents tended to confuse oral health maintenance and prevention, these two related concepts were separated into two items. Based on the qualitative work, we revised items in preparation for a field test. Conclusions:As a PRO measurement study, qualitative research informed a field test survey to assess factors associated with oral health status and the individual's perceptions and subjective views of these constructs for eventual item development for epidemiological and clinical use.

وصف الملف: application/pdf

الوصول الحر: https://escholarship.org/uc/item/6j3966g4Test