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

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.

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

10.21203/rs.2.19930/v2 ◽

2021 ◽

Author(s):

Mercedes Guilabert Mora ◽

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.

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Results of a PREM to measure the rare disease patients’ caregivers experience: A Spanish cross-sectional study

10.21203/rs.2.19930/v1 ◽

2020 ◽

Author(s):

Mercedes Guilabert Mora ◽

Alba Martínez-García ◽

Marina Sala-González ◽

Olga Solas ◽

José Joaquín Mira

Keyword(s):

Rare Disease ◽

Rare Diseases ◽

Response Rate ◽

Paediatric Population ◽

Cross Sectional Study ◽

Sectional Study ◽

Optimal Care ◽

Cross Sectional ◽

The Mean ◽

Mean Time

Abstract Objective To measure the experience of the person suffering from 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 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. 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.

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Ocular motility disturbances after glaucoma drainage device implantation for paediatric glaucoma: a cross-sectional study

British Journal of Ophthalmology ◽

10.1136/bjophthalmol-2020-317356 ◽

2020 ◽

pp. bjophthalmol-2020-317356

Author(s):

Kate Elspeth Leahy ◽

Katelyn MacNeill ◽

Jeff Locke ◽

Stephanie Sobey ◽

Stephen P Kraft ◽

...

Keyword(s):

Mass Effect ◽

Paediatric Population ◽

Cross Sectional Study ◽

Glaucoma Drainage Device ◽

Ocular Motility ◽

Sectional Study ◽

Cross Sectional ◽

Drainage Device ◽

Device Implantation ◽

Mean Time

AimTo grade extraocular motility in the field of action of each extraocular muscle following superotemporal glaucoma drainage device (GDD) implantation in a paediatric population and to investigate which drainage device (Ahmed vs Baerveldt) yields less extraocular motility disturbance.MethodsCross-sectional study of children with a GDD implanted consecutively by a single surgeon who underwent ocular motility examination by two masked orthoptists. Ductions in the cardinal positions were graded. Ocular alignment, visual acuity, binocularity, stereopsis and intraocular pressure were also measured, and patient charts were reviewed.ResultsThirty children each had one eye included. Twenty-one eyes had an Ahmed GDD and 9 had a Baerveldt GDD. Mean time between GDD insertion and ocular motility exam was 68 months in the Ahmed group and 19 months in the Baerveldt group. Exotropia was present in 46% and vertical heterotropia in 46% of children post-GDD insertion. Thirty-three percent of eyes had a moderate or severe limitation of elevation in abduction, 30% of elevation in adduction, 10% of abduction and 10% of adduction. There was a trend towards more eyes in the Ahmed group (62%) having at least a moderate limitation in ocular motility (−2 or worse; scale −1 to −4) compared with the Baerveldt group (22%).ConclusionStrabismus is common in children with GDDs. Our motility and alignment findings are consistent with either a mass effect of the device and bleb and/or scarring beneath the plate in the quadrant of the GDD causing dysmotility, most commonly limitation towards the GDD.

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Impact of single and combined rare diseases on adult inpatient outcomes: a retrospective, cross-sectional study of a large inpatient population

Orphanet Journal of Rare Diseases ◽

10.1186/s13023-021-01737-0 ◽

2021 ◽

Vol 16 (1) ◽

Author(s):

Reka Maria Blazsik ◽

Patrick Emanuel Beeler ◽

Karol Tarcak ◽

Marcus Cheetham ◽

Viktor von Wyl ◽

...

Keyword(s):

Rare Disease ◽

Rare Diseases ◽

Cross Sectional Study ◽

Hospital Death ◽

Sectional Study ◽

Cross Sectional ◽

Inpatient Outcomes ◽

Increased Risk ◽

Icd 10 ◽

The Impact

Abstract Background Little is known about the impact of rare diseases on inpatient outcomes. Objective To compare outcomes of inpatients with 0, 1, or > 1 rare disease. A catalogue of 628 ICD-10 coded rare diseases was applied to count rare diseases. Design Retrospective, cross-sectional study. Subjects 165,908 inpatients, Swiss teaching hospital. Main measures Primary outcome: in-hospital mortality. Secondary outcomes: length of stay (LOS), intensive care unit (ICU) admissions, ICU LOS, and 30-day readmissions. Associations with single and combined rare diseases were analyzed by multivariable regression. Key results Patients with 1 rare disease were at increased risk of in-hospital death (odds ratio [OR]: 1.80; 95% confidence interval [CI]: 1.67, 1.95), combinations of rare diseases showed stronger associations (OR 2.78; 95% CI 2.39, 3.23). Females with 1 rare disease had an OR of 1.69 (95% CI 1.50, 1.91) for in-hospital death, an OR of 2.99 (95% CI 2.36, 3.79) if they had a combination of rare diseases. Males had an OR of 1.85 (95% CI 1.68, 2.04) and 2.61 (95% CI 2.15, 3.16), respectively. Rare diseases were associated with longer LOS (for 1 and > 1 rare diseases: increase by 28 and 49%), ICU admissions (for 1 and > 1: OR 1.64 [95% CI 1.57, 1.71] and 2.23 [95% CI 2.01, 2.48]), longer ICU LOS (for 1 and > 1 rare diseases: increase by 14 and 40%), and 30-day readmissions (for 1 and > 1: OR 1.57 [95% CI 1.47, 1.68] and 1.64 [95% CI 1.37, 1.96]). Conclusions Rare diseases are independently associated with worse inpatient outcomes. This might be the first study suggesting even stronger associations of combined rare diseases with in-hospital deaths, increased LOS, ICU admissions, increased ICU LOS, and 30-day readmissions.

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

Crohn's & Colitis 360 ◽

10.1093/crocol/otab007 ◽

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.

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

Journal of Primary Care & Community Health ◽

10.1177/21501327211030413 ◽

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.

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Enhancing family nursing practice in schools: School nurses’ perspectives on illness beliefs and family nursing practice skills when caring for children with attention-deficit hyperactivity disorder or asthma – A cross-sectional study

Nordic Journal of Nursing Research ◽

10.1177/20571585211009690 ◽

2021 ◽

pp. 205715852110096

Author(s):

Erla Kolbrun Svavarsdottir ◽

Gudny Bergthora Tryggvadottir ◽

Margret Gisladottir ◽

Ragnheidur Osk Erlendsdottir

Keyword(s):

Nursing Practice ◽

Healthcare Services ◽

Cross Sectional Study ◽

School Nurses ◽

Illness Beliefs ◽

Sectional Study ◽

Cross Sectional ◽

Hyperactivity Disorder ◽

Family Nursing ◽

Practice Skills

An increasing number of children attend schools with chronic illnesses/disorders that require managing and comprehensive healthcare from school nurses during the day. Collaboration between school nurses, the school-aged child with attention-deficit hyperactivity disorder (ADHD) or asthma, and their families is needed when coordinating/managing chronic health problems in the school setting. However, involving families in the assessment and care planning processes can be challenging. The aim of this study was to survey the illness beliefs of school nurses and their perceptions of their family nursing practice skills when offering healthcare services to children with ADHD or asthma in schools. A cross-sectional study was used for a sample of 82 school nurses. The manuscript was prepared following STROBE guidelines. Results indicated that the school nurses perceived themselves to be more confident and to have better knowledge and skill in family nursing practice when offering healthcare services to families of children with ADHD in comparison to asthma.

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

BMC Psychiatry ◽

10.1186/s12888-021-03179-1 ◽

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.

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Evaluation of e-health (Seha) application: a cross-sectional study in Saudi Arabia

BMC Medical Informatics and Decision Making ◽

10.1186/s12911-021-01437-6 ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Abeer Alharbi ◽

Joharah Alzuwaed ◽

Hind Qasem

Keyword(s):

Saudi Arabia ◽

Health Services ◽

Healthcare Services ◽

Cross Sectional Study ◽

Advanced Technology ◽

Sectional Study ◽

Cross Sectional ◽

Technical Problems ◽

Significant Difference ◽

Ease Of Access

Abstract Background The Ministry of Health in Saudi Arabia is expanding the country’s telemedicine services by using advanced technology in health services. In doing so, an e-health application (app), Seha, was introduced in 2018 that allows individuals to have face-to-face visual medical consultations with their doctors on their smartphones. Objective This study evaluated the effectiveness of the app in improving healthcare delivery by ensuring patient satisfaction with the care given, increasing access to care, and improving efficiency in the healthcare system. Methods A cross-sectional study design was used to assess the perceptions of users of the Seha app and non-users who continued with traditional health services. The data were collected using an online survey via Google Forms between June 2020 and September 2020. Independent t tests and chi-square (χ2) tests were conducted to answer the research questions. Results There was a significant difference between users and non-users in terms of ease of access to health services (t = − 9.38, p < 0.05), with app users having a higher mean score (4.19 ± 0.91) than non-users (3.41 ± 1.00); satisfaction with health services (t = − 6.33, p < 0.05), with users having a higher mean score (3.96 ± 0.91) than non-users (3.45 ± 0.94); and efficiency (only one visit needed for treatment) (t = − 3.20, p < 0.05), with users having a higher mean score (3.71 ± 0.93) than non-users (3.45 ± 0.93). There were significant associations between the use of the Seha app and age (χ2 = 8.79, p < 0.05), gender (χ2 = 22.19, p < 0.05), region (χ2 = 19.74, p < 0.05), and occupation (χ2 = 22.05, p < 0.05). There were significant relationships between the three items (on access, satisfaction, and efficiency) and experiencing technical issues (t = 4.47, t = 8.11, and t = 3.24, respectively, p < 0.05), with users who faced technical problems having significantly lower mean scores for all three items. Conclusion This study provided evidence that the Seha app improved the delivery of healthcare in Saudi Arabia. Users of the app had a better health experience in terms of their perceived ease of access to healthcare services; their satisfaction with healthcare services; and the efficiency of the system, measured by the number of required doctor visits. Other factors that appeared to influence the use of the app included age, gender, usual source of care, and technical difficulties.

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