scholarly journals The Quality of Carer–Patient Relationship Scale: Adaptation and Validation into Portuguese

Author(s):  
Rosa Silva ◽  
Elzbieta Bobrowicz-Campos ◽  
Paulo Santos-Costa ◽  
Isabel Gil ◽  
Hugo Neves ◽  
...  

Background: This study aimed to translate and adapt the Quality of the Carer–Patient Relationship (QCPR) scale into Portuguese and analyse both its psychometric properties and correlation with sociodemographic and clinical variables. Methods: Phase (1) Translate and culturally adapt the scale. Phase (2) Assess the scale’s confirmatory factorial analysis, internal consistency, construct validity, and correlations. Results: The experts classified the overall quality of the translation as adequate. A total of 53 dyads (cared-for person and carer) were assessed. In both versions, measures of central tendency and symmetry were also adequate, and the two factors under investigation had appropriate reliability, although in the conflict/critical factor, this was more fragile. Cronbach’s alpha values were 0.89 for the cared-for person version and 0.91 for the carer version. Conclusions: The QCPR scale showed satisfactory to good values of reliability. The assessment is essential to guarantee structured interventions by health professionals, since the quality of the dyads’ relationship seems to influence both older adults’ quality of life and carers’ health status. This study is a significant contribution to the introduction of the QCPR scale in the Portuguese clinical and scientific culture but also an opportunity to increase its use internationally.

Author(s):  
Marilyn Rantz ◽  
G. F. Petroski ◽  
L. L. Popejoy ◽  
A. A. Vogelsmeier ◽  
K. E. Canada ◽  
...  

Abstract Objectives To measure the impact of advanced practice nurses (APRNs) on quality measures (QM) scores of nursing homes (NHs) in the CMS funded Missouri Quality Initiative (MOQI) that was designed to reduce avoidable hospitalizations of NH residents, improve quality of care, and reduce overall healthcare spending. Design A four group comparative analysis of longitudinal data from September 2013 thru December 2019. Setting NHs in the interventions of both Phases 1 (2012–2016) and 2 (2016–2020) of MOQI (n=16) in the St. Louis area; matched comparations in the same counties as MOQI NHs (n=27); selected Phase 2 payment intervention NHs in Missouri (n=24); NHs in the remainder of the state (n=406). Participants NHs in Missouri Intervention: Phase 1 of The Missouri Quality Initiative (MOQI), a Centers for Medicare and Medicaid (CMS) Innovations Center funded research initiative, was a multifaceted intervention in NHs in the Midwest, which embedded full-time APRNs in participating NHs to reduce hospitalizations and improve care of NH residents. Phase 2 extended the MOQI intervention in the original intervention NHs and added a CMS designed Payment Intervention; Phase 2 added a second group of NHs to receive the Payment. Intervention Only. Measurements Eight QMs selected by CMS for the Initiative were falls, pressure ulcers, urinary tract infections, indwelling catheters, restraint use, activities of daily living, weight loss, and antipsychotic medication use. For each of the monthly QMs (2013 thru 2019) an unobserved components model (UCM) was fitted for comparison of groups. Results The analysis of QMs reveals that that the MOQI Intervention + Payment group (group with the embedded APRNs) outperformed all comparison groups: matched comparison with neither intervention, Payment Intervention only, and remainder of the state. Conclusion These results confirm the QM analyses of Phase 1, that MOQI NHs with full-time APRNs are effective to improve quality of care.


Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 23-24
Author(s):  
Sylvia Von Mackensen ◽  
Pratima Chowdary ◽  
Sarah Mangles ◽  
Qifeng Yu ◽  
Baisong Mei ◽  
...  

Background: Fitusiran, an investigational RNA interference treatment for people with hemophilia A or B (PwH), with or without inhibitors, has shown dose-dependent lowering of antithrombin, increase in thrombin generation, and decrease in bleeding frequency in clinical trials. The novel mechanism of action and long pharmacodynamic effect enables once-monthly subcutaneous administration. This sustained hemostatic protection and less burdensome administration may improve patient-reported outcomes (PRO). Objective: To evaluate changes in PRO in terms of patient-relevant improvements in health-related quality of life (HRQoL) in PwH with inhibitors (PwHI) on prophylactic fitusiran treatment. Methods: Fitusiran was evaluated in a phase 1 dose-escalation study (NCT02035605) followed by a phase 2 open-label extension (OLE) study (NCT02554773) with monthly subcutaneous fixed doses of 50 mg or 80 mg. HRQoL was assessed using the Haem-A-QoL and the EuroQol 5 Dimensions (EQ-5D) questionnaires at baseline and at end of study in a cohort of 17 PwHI (Hemophilia A, n=15; Hemophilia B, n=2) from the phase 1 study. Results: Subjects previously treated on-demand or prophylactically had a mean (standard deviation [SD]) age of 34.6 (10.3) years and a mean (SD) number of bleeding episodes in the 6 months before baseline of 16.6 (10.7). Mean (SD) changes from baseline to end of study (day 84 or later) in Haem-A-QoL total (-9.2 [11.2]) and physical health (−12.3 [15.1]) domain scores suggest clinically meaningful improvement (lower scores indicate better HRQoL). Numeric reduction (i.e., improvement) in all other domains appeared to be dose-dependent (greater improvement in the 80 mg group) (Table 1). Changes in EQ-5D utility and EQ-VAS scores were not clinically meaningful. Further analyses in PwH with and without inhibitors from the phase 2 OLE will be presented. Conclusions: Fitusiran prophylaxis may improve HRQoL - particularly the Haem-A-QoL 'Physical health' domain (painful swelling, joint pain, pain with movement, difficulty walking, and time to get ready) as shown in a cohort of 17 PwHI . Additional analyses from ongoing OLE and phase 3 studies are planned to quantify the patient-relevant changes with fitusiran treatment in all hemophilia patients over time. Disclosures Von Mackensen: Sanofi, Bayer, Sobi, Chugai, Kedrion, Spark: Consultancy; Biotest, Sobi, CSL Behring: Honoraria; Novo Nordisk, Sobi: Research Funding. Chowdary:BioMarin: Honoraria; Bayer, CSL Behring, Freeline, Novo Nordisk, Pfizer and Sobi: Research Funding; Chugai, CSL Behring, Novo Nordisk, Pfizer, Roche, Sobi: Speakers Bureau; Bayer, Chugai, CSL Behring, Freeline, Novo Nordisk, Pfizer, Roche, Sanofi, Shire (Baxalta), Sobi, Spark: Membership on an entity's Board of Directors or advisory committees. Mangles:Roche, Takeda, Novo Nordisk: Consultancy, Membership on an entity's Board of Directors or advisory committees; Sobi, Octapharma, Novo Nordisk, Shire and Roche/Chugai: Other: travel funding. Yu:Sanofi: Other: was an employee and stockholder of Sanofi, at the time of study; Albireo Pharmaceuticals, Inc: Current Employment. Mei:Sanofi: Current Employment, Current equity holder in publicly-traded company. Andersson:Sanofi: Current Employment, Current equity holder in publicly-traded company. Dasmahapatra:Sanofi: Current Employment, Current equity holder in publicly-traded company.


2017 ◽  
Vol 103 (2) ◽  
pp. 370-375 ◽  
Author(s):  
Eugenie A Hsu ◽  
Jennifer L Miller ◽  
Francisco A Perez ◽  
Christian L Roth

Abstract Context Hypothalamic obesity, a treatment-resistant condition common to survivors of craniopharyngioma (CP), is strongly associated with a poor quality of life in this population. Oxytocin (OT), a hypothalamic neuropeptide, has been shown to play a role in the regulation of energy balance and to have anorexigenic effects in animal studies. Naltrexone (NAL), an opiate antagonist, has been shown to deter hedonic eating and to potentiate OT’s effects. Design In this parent-observed study, we tested the administration of intranasal OT for 10 weeks (phase 1), followed by a combination of intranasal OT and NAL for 38 weeks (phase 2) in a 13-year-old male with confirmed hypothalamic obesity and hyperphagia post-CP resection. Treatment resulted in 1) reduction in body mass index (BMI) z score from 1.77 to 1.49 over 10 weeks during phase 1; 2) reduction in BMI z score from 1.49 to 0.82 over 38 weeks during phase 2; 3) reduced hyperphagia during phases 1 and 2; 4) continued hedonic high-carbohydrate food-seeking in the absence of hunger during phases 1 and 2; and 5) sustained weight reduction during decreased parental monitoring and free access to unlocked food in the home during the last 10 weeks of phase 2. Conclusion This successful intervention of CP-related hypothalamic obesity and hyperphagia by OT alone and in combination with NAL is promising for conducting future studies of this treatment-recalcitrant form of obesity.


2013 ◽  
Vol 1 (15) ◽  
pp. 1-208 ◽  
Author(s):  
S Mason ◽  
C O’Keeffe ◽  
A Carter ◽  
R O’Hara ◽  
C Stride

BackgroundA major reform of junior doctor training was undertaken in 2004–5, with the introduction of foundation training (FT) to address perceived problems with work structure, conditions and training opportunities for postgraduate doctors. The well-being and motivation of junior doctors within the context of this change to training (and other changes such as restrictions in working hours of junior doctors and increasing demand for health care) and the consequent impact upon the quality of care provided is not well understood.ObjectivesThis study aimed to evaluate the well-being of foundation year 2 (F2) doctors in training. Phase 1 describes the aims of delivering foundation training with a focus on the role of training in supporting the well-being of F2 doctors and assesses how FT is implemented on a regional basis, particularly in emergency medicine (EM). Phase 2 identifies how F2 doctor well-being and motivation are influenced over F2 and specifically in relation to EM placements and quality of care provided to patients.MethodsPhase 1 used semistructured interviews and focus groups with postgraduate deanery leads, training leads (TLs) and F2 doctors to explore the strategic aims and implementation of FT, focusing on the specialty of EM. Phase 2 was a 12-month online longitudinal study of F2 doctors measuring levels of and changes in well-being and motivation. In a range of specialties, one of which was EM, data from measures of well-being, motivation, intention to quit, confidence and competence and job-related characteristics (e.g. work demands, task feedback, role clarity) were collected at four time points. In addition, we examined F2 doctor well-being in relation to quality of care by reviewing clinical records (criterion-based and holistic reviews) during the emergency department (ED) placement relating to head injury and chronic obstructive pulmonary disease (COPD).ResultsPhase 1 of the study found that variation exists in how successfully FT is implemented locally; F2 lacks a clearly defined end point; there is a minimal focus on the well-being of F2 doctors (only on the few already shown to be ‘in difficulty’); the ED presented a challenging but worthwhile learning environment requiring a significant amount of support from senior ED staff; and disagreement existed about the performance and confidence levels of F2 doctors. A total of 30 EDs in nine postgraduate medical deaneries participated in phase 2 with 217 foundation doctors completing the longitudinal study. F2 doctors reported significantly increased confidence in managing common acute conditions and undertaking practical procedures over their second foundation year, with the biggest increase in confidence and competence associated with their ED placement. F2 doctors had levels of job satisfaction and anxiety/depression that were comparable to or better than those of other NHS workers, and adequate quality and safety of care are being provided for head injury and COPD.ConclusionsThere are ongoing challenges in delivering high-quality FT at the local level, especially in time-pressured specialties such as EM. There are also challenges in how FT detects and manages doctors who are struggling with their work. The survey was the first to document the well-being of foundation doctors over the course of their second year, and average scores compared well with those of other doctors and health-care workers. F2 doctors are benefiting from the training provided as we found improvements in perceived confidence and competence over the year, with the ED placement being of most value to F2 doctors in this respect. Although adequate quality of care was demonstrated, we found no significant relationships between well-being of foundation doctors and the quality of care they provided to patients, suggesting the need for further work in this area.FundingThe National Institute for Health Research Health Services and Delivery Research programme.


2020 ◽  
Author(s):  
Cinzia Cecchetto ◽  
Marilena Aiello ◽  
Silvio Ionta ◽  
Claudio Gentili ◽  
Sofia Adelaide Osimo

Due to the spread of COVID 2019, the Italian government imposed a lockdown on the national territory. Initially, citizens were required to stay at home and not to mix with others outside of their household (Phase 1); eventually, some of these restrictions were lifted (Phase 2). To investigate the impact of lockdown on emotional and binge eating, an online survey was conducted to compare measures of self-reported physical (BMI), psychological (Alexithymia), affective (anxiety, stress, and depression) and social (income, workload) state during Phase 1 and Phase 2. Data from 365 Italian residents showed that increased emotional eating was predicted by higher depression, anxiety, quality of personal relationships, and quality of life, while the increase of bingeing was predicted by higher stress. Moreover, we showed that higher alexithymia scores were associated by increased emotional eating and higher BMI scores were associated with both increased emotional eating and binge eating. Finally, we found that from Phase 1 to Phase 2 binge and emotional eating decreased. These data provide evidence of the negative effects of isolation and lockdown on emotional wellbeing, and, relatedly, on eating behaviour.


Epidemiologia ◽  
2021 ◽  
Vol 2 (3) ◽  
pp. 227-242
Author(s):  
Paula McFadden ◽  
Ruth D. Neill ◽  
John Moriarty ◽  
Patricia Gillen ◽  
John Mallett ◽  
...  

As the COVID-19 pandemic continues to evolve around the world, it is important to examine its effect on societies and individuals, including health and social care (HSC) professionals. The aim of this study was to compare cross-sectional data collected from HSC staff in the UK at two time points during the COVID-19 pandemic: Phase 1 (May–July 2020) and Phase 2 (November 2020–January 2021). The HSC staff surveyed consisted of nurses, midwives, allied health professionals, social care workers and social workers from across the UK (England, Wales, Scotland, Northern Ireland). Multiple regressions were used to examine the effects of different coping strategies and demographic and work-related variables on participants’ wellbeing and quality of working life to see how and if the predictors changed over time. An additional multiple regression was used to directly examine the effects of time (Phase 1 vs. Phase 2) on the outcome variables. Findings suggested that both wellbeing and quality of working life deteriorated from Phase 1 to Phase 2. The results have the potential to inform interventions for HSC staff during future waves of the COVID-19 pandemic, other infectious outbreaks or even other circumstances putting long-term pressures on HSC systems.


2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 9004-9004 ◽  
Author(s):  
S. Kohli ◽  
S. G. Fisher ◽  
Y. Tra ◽  
K. Wesnes ◽  
G. R. Morrow

9004 Background: Patients receiving treatment for cancer can experience a diminution of their cognitive abilities which can persist for many years after. The present study examined the potential of modafinil as a cognitive enhancer on memory and attention in a randomized clinical trial in breast cancer patients following completion of treatment. Methods: Breast cancer patients who reported a score of = 2 on the Brief Fatigue Inventory (BFI) an average of 22.8 months following completion of chemotherapy were enrolled. In Phase 1, patients received 200mg modafinil open-label once daily for 4 weeks. In Phase 2, patients with a positive response following Phase 1 were randomized either to an additional 4 weeks of modafinil or to placebo. Tests of memory and attention selected from the Cognitive Drug Research (CDR) computerized cognitive assessment were performed at baseline (before modafinil) and after completing Phase 1 and 2. The difference between scores at baseline and scores at Phase 1 and Phase 2, were subjected to a Wilcoxon's signed rank test. Results: Of the 82 women enrolled, 68 completed all 3 CDR assessments in the study (range=33–83 years, median age=54 years). At the end of Phase 1 (week 4), modafinil had a significant effect on the Speed of Memory Index (p=0.0047) and the Digit Vigilance Test (p=0.0014) but showed no significant effect on Quality of Working Memory (p=0.3528) nor on Power of Attention (p=0.8953). At the end of phase 2 (week 8), the group that continued modafinil demonstrated improved Mean Continuity of Attention (p=0.0002) compared with the placebo group and also demonstrated significantly greater improvements in Quality of Episodic Secondary Memory relative to placebo (p<0.005). This improvement was observed at week 4, and was maintained throughout the study. Finally, continued modafinil demonstrated significantly greater improvement in Speed of Memory relative to placebo (p=0.009). Conclusions: Modafinil provides significant improvements in attention and speed of memory for breast cancer patients following their treatment of cancer. Although further study is needed, these findings suggest that modafinil may enhance quality of life in this patient population. Supported by a grant from Cephalon, Inc and NCI Grants U10-CA37420 and R25- CA102618. No significant financial relationships to disclose.


2016 ◽  
Vol 4 (24) ◽  
pp. 1-232 ◽  
Author(s):  
Gill Hubbard ◽  
Julie Munro ◽  
Ronan O’Carroll ◽  
Nanette Mutrie ◽  
Lisa Kidd ◽  
...  

BackgroundColorectal cancer (CRC) survivors are not meeting the recommended physical activity levels associated with improving their chances of survival and quality of life. Rehabilitation could address this problem.ObjectivesThe aims of the Cardiac Rehabilitation In Bowel cancer study were to assess whether or not cardiac rehabilitation is a feasible and acceptable model to aid the recovery of people with CRC and to test the feasibility and acceptability of the protocol design.DesignIntervention testing and feasibility work (phase 1) and a pilot randomised controlled trial with embedded qualitative study (phase 2), supplemented with an economic evaluation. Randomisation was to cardiac rehabilitation or usual care. Outcomes were differences in objective measures of physical activity and sedentary behaviour, self-reported measures of quality of life, anxiety, depression and fatigue. Qualitative work involved patients and clinicians from both cancer and cardiac specialties.SettingThree colorectal cancer wards and three cardiac rehabilitation facilities.ParticipantsInclusion criteria were those who were aged > 18 years, had primary CRC and were post surgery.ResultsPhase 1 (single site) – of 34 patient admissions, 24 (70%) were eligible and 4 (17%) participated in cardiac rehabilitation. Sixteen clinicians participated in an interview/focus group. Modifications to trial procedures were made for further testing in phase 2. Additionally, 20 clinicians in all three sites were trained in cancer and exercise, rating it as excellent. Phase 2 (three sites) – screening, eligibility, consent and retention rates were 156 (79%), 133 (67%), 41 (31%) and 38 (93%), respectively. Questionnaire completion rates were 40 (97.5%), 31 (75%) and 25 (61%) at baseline, follow-up 1 and follow-up 2, respectively. Forty (69%) accelerometer data sets were analysed; 20 (31%) were removed owing to invalid data.Qualitative studyCRC and cardiac patients and clinicians were interviewed. Key themes were benefits and barriers for people with CRC attending cardiac rehabilitation; generic versus disease-specific rehabilitation; key concerns of the intervention; and barriers to participation (CRC participants only).Economic evaluationThe average out-of-pocket expenses of attending cardiac rehabilitation were £50. The costs of cardiac rehabilitation for people with cancer are highly dependent on whether it involves accommodating additional patients in an already existing service or setting up a completely new service.Limitations and conclusionsThe main limitation is that this is a small feasibility and pilot study. The main novel finding is that cardiac rehabilitation for cancer and cardiac patients together is feasible and acceptable, thereby challenging disease-specific rehabilitation models.Future workThis study highlighted important challenges to doing a full-scale trial of cardiac rehabilitation but does not, we believe, provide sufficient evidence to reject the possibility of such a future trial. We recommend that any future trial must specifically address the challenges identified in this study, such as suboptimal consent, completion, missing data and intervention adherence rates and recruitment bias, and that an internal pilot trial be conducted. This should have clear ‘stop–proceed’ rules that are formally reviewed before proceeding to the full-scale trial.Trial registrationCurrent Controlled Trials ISRCTN63510637.FundingThis project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full inHealth Services and Delivery Research; Vol. 4, No. 24. See the NIHR Journals Library website for further project information.


CoDAS ◽  
2020 ◽  
Vol 32 (3) ◽  
Author(s):  
Anelise Henrich Crestani ◽  
Anaelena Bragança de Moraes ◽  
Adriano Mendonça Souza ◽  
Ana Paula Ramos de Souza

ABSTRACT Purpose: To perform the construct validation of enunciative signs of language acquisition for children aged 3 to 12 months. Method: The study sample consisted of 94 mother-infant dyads for the analysis of Phase 1 (3-6 months) signs and 61 dyads for the analysis of Phase 2 (7-12 months) signs. Data collection was performed through analysis of the interaction between mothers and infants in play situation recorded in 15-min videos in the predicted phases, with attribution of value types of present or absent to each sign analyzed. The collected data were organized on a spreadsheet and then converted to computer applications for factor analysis. Results: Factor analysis indicated the existence of two factors named “mother” and “infant” both for Phase 1 signs (explaining 71.9% of the variation) - with three signs relevant for the “infant” factor and one sign relevant for the “mother” factor, and for Phase 2 signs (explaining 74.4% of the variation) - with one sign relevant for the “infant” factor and one sign relevant for the “mother” factor. Conclusion: Construct validation showed that one “mother” factor and one “infant” factor were able to distinguish between at-risk and not-at-risk groups in both phases analyzed, which suggests that the absence of these signs may pose risks to language acquisition.


Iproceedings ◽  
10.2196/15259 ◽  
2019 ◽  
Vol 5 (1) ◽  
pp. e15259
Author(s):  
Galen Shi ◽  
Pavan Shah ◽  
Therese Canares ◽  
Ingrid Zimmer-Galler

Background In a hospital setting, pediatric patients miss out on routine stress coping mechanisms, such as normative play, socialization, and exploration. Previous work has established that a lack of healthy coping mechanisms negatively impacts the psychosocial development and well-being of hospitalized children. To help alleviate the stress of hospitalization, we created a novel, normative play robotics program that utilizes telepresence technology to give children live, virtual tours of museums and cultural attractions. Objective The objective was to 1) demonstrate feasibility, and 2) assess quality and impact on mood of telepresence tours as a new normative play intervention. Methods A prospective, cross-sectional study was conducted on inpatients at the Johns Hopkins Children's Center and the University of Maryland Children's Hospital from the ages of 3 to 19. Subjects were selected through convenience sampling by Child Life Specialists. The intervention consisted of a 30-minute session in which a volunteer: 1) remotely connected a laptop in the hospital room to a telepresence robot at the Maryland Science Center or the National Aquarium; 2) introduced the child to their venue tour guide and taught the child how to drive the robot, and 3) facilitated a tour in conjunction with the venue tour guide on site with the robot. Feasibility was assessed by the rate of completed tours. Quality of the experience and mood were evaluated with surveys answered with a 5 or 7-point Likert scale. Surveys were administered in 2 phases: phase 1 evaluated quality of the experience after the tour, and phase 2 included the phase 1 survey plus mood assessment before and after the tour. The two-tailed Wilcoxon signed-rank test was used to determine statistical significance in difference in mood before and after the tour. Verbal consent was obtained from patient guardians and assent was obtained from the patient. Results 77 tours were conducted with pediatric inpatients, and no tours were terminated due to technical difficulty. Out of 77 children, 68 completed surveys. In phase 1 (n=40) participants’ average age was 7.8 years. On average, patients rated their overall experience a 4.8/5, ease of driving 4.1/5, ease of communicating with other guests at the venues a 4.3/5, and their tour guides a 4.7/5. In phase 2 (n=37), average age was 10.1 years. Children’s self-reported mood improved from pre-visit (3.7/5) to post visit (4.4/5) (P<.001). Additionally, patients rated their overall ease of driving 5.8/7, ease of communicating with other guests at the venues 5.3/7, and their tour guides 6.8/7. Conclusions Patients reported positive assessments of their overall experience, ease of driving, communication with tour guides and guests at the venues, and elevated mood after the tour. This study demonstrates that telepresence tours are a feasible and enjoyable intervention for hospitalized pediatric patients, and significantly improve mood. This unique program adds to existing child life specialist strategies by allowing children to engage in normative behaviors outside of the hospital. This novel use of telepresence robotics as a normative play intervention warrants future studies to further characterize the improvement in mood and impact on the patient’s overall hospital satisfaction.


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