Patient, Caregiver, and Provider Perceptions of Transition Readiness and Therapeutic Alliance during Transition from Pediatric to Adult Care in Epilepsy

2020 ◽  
Vol 09 (04) ◽  
pp. 156-163
Author(s):  
Emily R. Nurre ◽  
Aimee W. Smith ◽  
Marie G. Rodriguez ◽  
Avani C. Modi
Keyword(s):  
Transition Process ◽  
Cross Sectional Study ◽  
Adult Health ◽  
Sectional Study ◽  
Adult Care ◽  
Cross Sectional ◽  
Provider Perceptions ◽  
Transition Readiness ◽  
Patient Reported ◽  
Generalized Epilepsy

AbstractTransition from pediatric to adult health care is a time of high risk for adolescents and young adults (AYAs) with epilepsy. Our aims are to examine patient, caregiver, and provider perceptions of transition readiness and the influence of patient-provider alliance in the context of transition readiness. Our cross-sectional study included 82 AYAs with epilepsy prior to transition. Patients, caregivers, and providers completed questionnaires (e.g., transition readiness and working alliance). Statistical analyses included independent samples and paired t-tests. Participants were 17.3 ± 2.8 years on average, 54% were females, 84% were White (non-Hispanic), and 38% had generalized epilepsy. Caregivers reported significantly higher transition readiness than their AYAs (t (72) = −10.6, p < 0.001). AYAs and providers reported similar alliance scores. Providers who felt patients were ready to transition had higher patient-reported transition readiness and provider-reported alliance scores. These data suggest that patients and providers are well aligned in the transition process, and providers appropriately perceive key areas necessary for transition. Caregivers and patients had discrepant perceptions of transition readiness, highlighting the importance of assessing both unique transition perspectives. Dedicated transition programs are likely to be beneficial in improving transition readiness and increase alignment across patients, caregivers, and providers.

scholarly journals Assessment of transition readiness in adolescents in Thailand with rheumatic diseases: a cross-sectional study

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Sirinthip Kittivisuit ◽  
Butsabong Lerkvaleekul ◽  
Sirisucha Soponkanaporn ◽  
Pintip Ngamjanyaporn ◽  
Soamarat Vilaiyuk
Keyword(s):  
Rheumatic Diseases ◽  
Chronically Ill ◽  
Cross Sectional Study ◽  
Inactive Disease ◽  
Sectional Study ◽  
Adult Care ◽  
Cross Sectional ◽  
Term Care ◽  
Transition Readiness ◽  
Readiness Skills

Abstract Background Most childhood-onset rheumatic diseases are chronic health conditions, which need long-term care throughout adulthood. A well-organized transition care is challenging and patient assessment of transition skills is needed for transfer preparation to an adult care setting. The Transition Readiness Assessment Questionnaire (TRAQ) is used to assess transition skills in chronically ill patients. Currently, limited transition skill assessment data exist in pediatric patients with rheumatic diseases, especially in Asian countries. This study aimed to determine the transition readiness skills in patients with rheumatic diseases and ascertain predictive factors contributing to high transition readiness skills. Methods This is a cross-sectional study. All patients with rheumatic diseases aged 15–20 years were recruited. The TRAQ was cross-culturally adapted into the Thai language with good internal consistency and reliability. Patients completed the Thai TRAQ at the recent clinic visit and took the retest at a 2-week interval. Demographic data, baseline characteristics, clinical manifestations, and disease status were collected. Descriptive and logistic regression analyses were performed. Results A total of 111 patients with a mean age of 17.4 ± 1.8 years were included. Median (IQR) disease duration was 6.4 (3.2–9.0) years. The most common rheumatic disease was juvenile idiopathic arthritis (48.6%), followed by systemic lupus erythematosus (35.1%). The mean TRAQ score was 3.85 ± 0.69. Independent visits (OR 4.35, 95% CI 1.23–15.37) was a predictor of a high TRAQ score. Furthermore, dependent visits (OR 7.84, 95% CI 2.41–25.50) was a predictor of low TRAQ score in the “appointment keeping” domain, whereas inactive disease (OR 4.54, 95% CI 1.25–16.55) was a predictor of a low TRAQ score in “tracking health issues” domain. Lack of knowledge and skills on health insurance coverage, financial management, appointment arrangement, and coping with their illness were issues causing lower TRAQ score. Conclusions Patients, who had independent visits, had a higher chance to obtain higher TRAQ scores, whereas patients, who had an inactive disease or dependent visits, had less transition readiness skills. Physicians and parents should prepare to transfer patients to adult care settings, mainly encouraging independent living skills.

scholarly journals Full, partial and modified permutations of the Mayo Score: Characterizing clinical and patient-reported outcomes in ulcerative colitis patients

2021 ◽  
Author(s):  
April N Naegeli ◽  
Theresa Hunter ◽  
Yan Dong ◽  
Ben Hoskin ◽  
Chloe Middleton-Dalby ◽  
...  
Keyword(s):  
Ulcerative Colitis ◽  
Patient Reported Outcomes ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Assessment Scores ◽  
Mayo Score ◽  
Patient Reported ◽  
Practice Trials ◽  
Highly Correlated

Abstract Background Understanding ulcerative colitis (UC) disease activity assessed via the full, modified or partial Mayo Score may help clinicians apply results from clinical trials to practice and facilitate interpretation of recent and older studies. Methods Mayo Score variables were assessed in a cross-sectional study of 2608 UC patients. Results Permutations of Mayo Scores were highly correlated, and models predicting the omitted variable from each permutation demonstrated significant agreement between predicted and observed values. Conclusions Partial/modified Mayo Scores may be used to predict endoscopic and Physician's Global Assessment scores, and serve as proxies for the full Mayo Score in clinical practice/trials.

scholarly journals Results of a Patient Reported Experience Measure (PREM) to measure the rare disease patients and caregivers experience: a Spanish cross-sectional study

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Mercedes Guilabert ◽  
Alba Martínez-García ◽  
Marina Sala-González ◽  
Olga Solas ◽  
José Joaquín Mira
Keyword(s):  
Rare Disease ◽  
Rare Diseases ◽  
Healthcare Services ◽  
Paediatric Population ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Optimal Care ◽  
Cross Sectional ◽  
Patient Reported ◽  
Mean Time

Abstract Objective To measure the experience of the person having a rare disease in order to identify objectives for optimal care in the health care received by these patients. Methods. A cross-sectional study was conducted in Spain involving patients associated with the Spanish Rare Diseases Federation [Federación Española de Enfermedades Raras] (FEDER). A modified version of the PREM IEXPAC [Instrumento para evaluar la Experiencia del Paciente Crónico] instrument was used (IEXPAC-rare-diseases). Scores ranged between 0 (worst experience) and 10 (best experience). Results A total of 261 caregivers (in the case of paediatric population) and patients with rare diseases (response rate 54.4%) replied. 232 (88.9%) were adult patients and 29 (11.1%) caregivers of minor patients. Most males, 227 (87%), with an average age of 38 (SD 13.6) years. The mean time since confirmation of diagnosis was 7.8 (SD 8.0) years. The score in this PREM was 3.5 points out to 10 (95%CI 3.2–3.8, SD 2.0). Caregivers of paediatric patients scored higher, except for coordination of social and healthcare services. Conclusions There are wide and important areas for improvement in the care of patients with rare diseases. This study involves a first assesment of the experience of patients with rare diseases in Spain.

scholarly journals PROMIS Scales for Assessment of Persistent Post-COVID Symptoms: A Cross Sectional Study

2021 ◽  
Vol 12 ◽  
pp. 215013272110304
Author(s):  
Ravindra Ganesh ◽  
Aditya K. Ghosh ◽  
Mark A. Nyman ◽  
Ivana T. Croghan ◽  
Stephanie L. Grach ◽  
...  
Keyword(s):  
Health Status ◽  
Social Roles ◽  
Disease Process ◽  
Cross Sectional Study ◽  
Large Sample Size ◽  
Sectional Study ◽  
Cross Sectional ◽  
Data Set ◽  
Patient Reported ◽  
The Impact

Objective Persistent post-COVID symptoms are estimated to occur in up to 10% of patients who have had COVID-19. These lingering symptoms may persist for weeks to months after resolution of the acute illness. This study aimed to add insight into our understanding of certain post-acute conditions and clinical findings. The primary purpose was to determine the persistent post COVID impairments prevalence and characteristics by collecting post COVID illness data utilizing Patient-Reported Outcomes Measurement Information System (PROMIS®). The resulting measures were used to assess surveyed patients physical, mental, and social health status. Methods A cross-sectional study and 6-months Mayo Clinic COVID recovered registry data were used to evaluate continuing symptoms severity among the 817 positive tested patients surveyed between March and September 2020. The resulting PROMIS® data set was used to analyze patients post 30 days health status. The e-mailed questionnaires focused on fatigue, sleep, ability to participate in social roles, physical function, and pain. Results The large sample size (n = 817) represented post hospitalized and other managed outpatients. Persistent post COVID impairments prevalence and characteristics were determined to be demographically young (44 years), white (87%), and female (61%). Dysfunction as measured by the PROMIS® scales in patients recovered from acute COVID-19 was reported as significant in the following domains: ability to participate in social roles (43.2%), pain (17.8%), and fatigue (16.2%). Conclusion Patient response on the PROMIS® scales was similar to that seen in multiple other studies which used patient reported symptoms. As a result of this experience, we recommend utilizing standardized scales such as the PROMIS® to obtain comparable data across the patients’ clinical course and define the disease trajectory. This would further allow for effective comparison of data across studies to better define the disease process, risk factors, and assess the impact of future treatments.

scholarly journals Family involvement and patient-experienced improvement and satisfaction with care: a nationwide cross-sectional study in Danish psychiatric hospitals

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Marie Louise Svendsen ◽  
Trine Ellegaard ◽  
Karoline Agerbo Jeppesen ◽  
Erik Riiskjær ◽  
Berit Kjærside Nielsen
Keyword(s):  
Psychiatric Hospital ◽  
Hospital Care ◽  
Psychiatric Hospitals ◽  
Cross Sectional Study ◽  
Satisfaction With Care ◽  
Sectional Study ◽  
Cross Sectional ◽  
Caregiver Relationship ◽  
Patient Reported ◽  
Caregiver Involvement

Abstract Background Randomised controlled trials suggest that family therapy has a positive effect on the course of depression, schizophrenia and anorexia nervosa. However, it is largely unknown whether a positive link also exists between caregiver involvement and patient outcome in everyday psychiatric hospital care, using information reported directly from patients, i.e. patient-reported experience measures (PREM), and their caregivers. The objective of this study is to examine whether caregiver-reported involvement is associated with PREM regarding patient improvement and overall satisfaction with care. Methods Using data from the National Survey of Psychiatric Patient Experiences 2018, we conducted a nationwide cross-sectional study in Danish psychiatric hospitals including patients and their caregivers who had been in contact with the hospital (n = 940 patients, n = 1008 caregivers). A unique patient identifier on the two distinct questionnaires for the patient and their caregiver enabled unambiguous linkage of data. In relation to PREM, five aspects of caregiver involvement were analysed using logistic regression with adjustment for patient age, sex and diagnosis. Results We consistently find that high caregiver-reported involvement is statistically significantly associated with high patient-reported improvement and overall satisfaction with care with odds ratios (OR) ranging from 1.69 (95% confidence interval (CI) 0.95–2.99) to 4.09 (95% CI 2.48–6.76). This applies to the following aspects of caregiver-reported involvement: support for the patient-caregiver relationship, caregiver information, consideration for caregiver experiences and the involvement of caregivers in decision making. No statistically significant association is observed regarding whether caregivers talk to the staff about their expectations for the hospital contact. Conclusion This nationwide study implies that caregiver involvement focusing on the patient-caregiver relationship is positively associated with patient improvement and overall satisfaction with care in everyday psychiatric hospital care.

scholarly journals Stratification of BMI categories among older adults within and across countries

2019 ◽  
Vol 23 (2) ◽  
pp. 254-263
Author(s):  
Carmen D Ng
Keyword(s):  
Older Adults ◽  
Nutrition Transition ◽  
Developed Countries ◽  
Cross Sectional Study ◽  
Adult Health ◽  
Sectional Study ◽  
Programme Implementation ◽  
Cross Sectional ◽  
Per Capita ◽  
Global Ageing

AbstractObjective:Within- and across-country nutritional disparities were examined among older adults in six different countries at varying levels of development.Design:Cross-sectional study.Participants:Older adults (aged 50 years or over) in China, Ghana, India, Mexico, Russia and South Africa using the Study on global AGEing and adult health (SAGE).Results:While the distribution of BMI categories varied by country, development-related characteristics were generally related to BMI category in a similar way: urban-living, educated and wealthier individuals were typically more likely to be in a higher BMI category. However, there were some exceptions that corroborate findings in more developed countries. Indeed, a pooled partial proportional odds model which included gross domestic product per capita interactions made the case for intertwining processes of development and the nutrition transition.Conclusions:Population segments to be targeted by nutrition policy and programme implementation might need to change over the course of development.

scholarly journals Gastrointestinal Symptoms of and Psychosocial Changes in Inflammatory Bowel Disease: A Nursing-Led Cross-Sectional Study of Patients in Clinical Remission

Medicina ◽  
2020 ◽  
Vol 56 (1) ◽  
pp. 45 ◽  
Author(s):  
Rosellina Margherita Mancina ◽  
Raffaele Pagnotta ◽  
Caterina Pagliuso ◽  
Vincenzo Albi ◽  
Daniela Bruno ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Gastrointestinal Symptoms ◽  
Cross Sectional Study ◽  
Sectional Study ◽  
Cross Sectional ◽  
Patient Reported ◽  
Inflammatory Bowel ◽  
The Impact

Background and Objectives: Nursing management in Inflammatory Bowel Disease (IBD) is focused on global patient care. Starting from basic knowledge of diagnostic and therapeutic management, nurses can assess the impact of IBD on patients’ quality of life not only at the physical level, but also at the psychological, social, and emotional levels. The aim of this study was to evaluate the impact of gastrointestinal symptoms on psychosocial changes in IBD patients in remission through nursing-led Patient-Reported Outcomes. Materials and Methods: We performed a cross-sectional study of 109 IBD patients in clinical and endoscopic remission. Specialist nurses invited patients to complete questionnaires on gastrointestinal symptoms and quality of life through the Patient-Reported Outcomes Measurement Information System (PROMIS). Results: We found that the gastrointestinal symptoms that the patients reported had a significant impact on the analyzed aspects of health. More specifically, belly pain, diarrhea, and bloating were associated with depressive symptoms (p < 0.001), anxiety (p < 0.001), fatigue (p < 0.001), and sleep disturbances (p < 0.001). Moreover, these symptoms also significantly affected patients’ social dimension in terms of satisfaction with participation in social roles (p < 0.001, p < 0.05, and p < 0.001 for belly pain, diarrhea, and bloating, respectively) and physical functions (p < 0.001). The results were virtually the same in a multivariable analysis adjusted by age, gender, body mass index (BMI), and disease duration. Conclusions: Even during remission, gastrointestinal symptoms are the main factors that influence quality of life in IBD patients. This exploratory study highlights the need to adopt validated questionnaires in clinical practice, and demonstrates that PROMIS is a valid, objective, and standardized instrument that can help nursing staff to better define the consequences of the disease in a patient’s daily life.

scholarly journals Establishing User Error on the Patient-Reported Component of the American Shoulder and Elbow Surgeons Shoulder Score

2020 ◽  
Vol 8 (3) ◽  
pp. 232596712091009
Author(s):  
Jonathan Bourget-Murray ◽  
Ariana Frederick ◽  
Lisa Murphy ◽  
Jacqui French ◽  
Shane Barwood ◽  
...  
Keyword(s):  
Total Error ◽  
Cross Sectional Study ◽  
Patient Reported Outcome ◽  
Error Rates ◽  
Sectional Study ◽  
Level Of Evidence ◽  
Cross Sectional ◽  
Total Error Rate ◽  
Patient Reported ◽  
The Mean

Background: The American Shoulder and Elbow Surgeons (ASES) score is a patient-reported outcome (PRO) questionnaire developed to facilitate communication among international investigators and to allow comparison of outcomes for patients with shoulder disabilities. Although this PRO measure has been deemed easy to read and understand, patients may make mistakes when completing the questionnaire. Purpose: To evaluate the frequency of potential mistakes made by patients completing the ASES score. Study Design: Cross-sectional study; Level of evidence, 3. Methods: A prospective cross-sectional study was performed for 600 ASES questionnaires completed by patients upon their first visit to 1 of 2 clinic locations (Australian vs Canadian site). Two categories of potential errors were predefined, and then differences in error rates were compared based on demographics (age, sex, and location). To determine whether these methods were reliable, an independent, third reviewer evaluated a subset of questionnaires separately. The interrater reliability was evaluated through use of the Cohen kappa. Results: The mean patient age was 49.9 years, and 63% of patients were male. The Cohen kappa was high for both evaluation methods used, at 0.831 and 0.918. On average, 17.9% of patients made at least 1 potential mistake, while an additional 10.4% of patients corrected their own mistakes. No differences in total error rate were found based on baseline demographics. Canadians and Australians had similar rates of error. Conclusion: To ensure the accuracy of the ASES score, this questionnaire should be double checked, as potential mistakes are too frequently made. This attentiveness will ensure that the ASES score remains a valid, reliable, and responsive tool to be used for further shoulder research.

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