scholarly journals The PROactive Cohort Study: Rationale, Design, and Study Procedures

2021 ◽  
Author(s):  
Merel. M Nap-van der Vlist ◽  
Johanna W. Hoefnagels ◽  
Geertje W. Dalmeijer ◽  
Neha Moopen ◽  
van der Cornelis K. Ent ◽  
...  
Keyword(s):  
Cohort Study ◽  
Outcome Measures ◽  
Chronic Condition ◽  
Daily Life ◽  
Longitudinal Design ◽  
Clinical Care ◽  
Psychosocial Problems ◽  
Well Being ◽  
Assessment Tools ◽  
Research Assessment

Abstract Children with a chronic condition face more obstacles than their healthy peers, which may impact their physical, social-emotional, and cognitive development. The PROactive cohort study identifies children with a chronic disease at high risk of debilitating fatigue, decreased daily life participation and psychosocial problems, as well as children who are resilient and thrive despite the challenges of growing up with a chronic condition. Both groups will teach us how we can best support children, adolescents and parents to adapt to and manage a disease, as well as tailor interventions to their specific needs. This cohort follows a continuous longitudinal design. It is based at the Wilhelmina Children's Hospital (WKZ) in the Netherlands and has been running since December 2016. Children with a chronic condition (e.g. cystic fibrosis, juvenile idiopathic arthritis, chronic kidney disease, or congenital heart disease) as well children with medically unexplained fatigue or pain in a broad age range (2-18 years) are included, as well as their parent(s). Data are collected from parents (of children between 2-18 years) and children (8-18 years), as well as data from their electronic health record (EHR). Primary outcome measures are fatigue, daily life participation, and psychosocial well-being, all assessed via patient- and proxy-reported outcome measures. Generic biological/lifestyle, psychological, and social factors were assessed using clinical assessment tools and questionnaires. In the PROactive cohort study the research assessment is an integrated part of clinical care. Children are included when they visit the outpatient clinic and are followed up annually.

scholarly journals Scar Assessment Tools: How Do They Compare?

2021 ◽  
Vol 8 ◽  
Author(s):  
Amanda Min Hui Choo ◽  
Yee Siang Ong ◽  
Fadi Issa
Keyword(s):  
Outcome Measures ◽  
Clinical Relevance ◽  
Treatment Strategies ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Assessment Tools ◽  
Scar Assessment ◽  
Wide Range ◽  
Patient Reported

Healing after dermal injury is a complex but imperfect process that results in a wide range of visible scars. The degree of disfigurement is not the sole determinant of a scar's effect on patient well-being, with a number of other factors being critical to outcome. These include cosmetic appearance, symptoms such as itch and pain, functional loss, psychological or social problems, and quality of life. An accurate assessment of these domains can help clinicians measure outcomes, develop, and evaluate treatment strategies. A PubMed literature search was performed up to 31st March 2020. Ten objective scar measurements, four Clinician-Reported Outcome Measures (CROMs), six Patient-Reported Outcome Measures (PROMs), and one combined measure were evaluated for their reliability, clinical relevance, responsiveness to clinical change, and feasibility. Many quantitative tools were limited in their clinical relevance and feasibility, whereas few qualitative CROMs and PROMs have undergone rigorous assessment. This review examines currently available assessment tools, focusing primarily on subjective scar measurements (CROMs, PROMs), and offers a perspective on future directions in the field.

Daily lives of residents with dementia in nursing homes: development of the Maastricht electronic daily life observation tool

2016 ◽  
Vol 28 (8) ◽  
pp. 1333-1343 ◽  
Author(s):  
B. de Boer ◽  
H.C. Beerens ◽  
S.M.G. Zwakhalen ◽  
F.E.S. Tan ◽  
J.P.H. Hamers ◽  
...  
Keyword(s):  
Nursing Home ◽  
Social Interaction ◽  
Physical Environment ◽  
Daily Life ◽  
Nursing Home Residents ◽  
Well Being ◽  
Assessment Tools ◽  
Daily Lives ◽  
Promising Tool ◽  
Absolute Agreement

ABSTRACTBackground:Daily life is a dynamic and multidimensional concept, for which appropriate assessment tools are lacking. This study describes the development of the Maastricht Electronic Daily Life Observation tool (MEDLO-tool), a freely accessible, easy to use, electronic observation tool to assess relevant daily life aspects for nursing home residents with dementia.Methods:(1) Determining relevant aspects of daily life for nursing home residents with dementia based on a literature search and expert interviews; (2) pilot testing observation procedures and operationalizations of the aspects of daily life; and (3) exploring inter-rater reliability and feasibility of the tool in a nursing home facility with 16 residents (56% female, mean age: 77).Results:The following aspects of daily life are assessed with the MEDLO-tool: (1) activity (activity performed by resident, engagement in this activity, and the degree of physical effort); (2) physical environment (location of the resident and interaction with the physical environment); (3) social interaction (the level and type of social interaction, and with whom this social interaction took place); and (4) emotional well-being (mood and agitation). Each aspect of daily life is observed and scored using standardized scoring options. Agreement on the aspects is high with an average absolute agreement of 86%. Users of the MEDLO-tool indicated that it was feasible in practice and contained clear operationalization of the aspects of daily life.Conclusions:The MEDLO-tool is a promising tool to gain real time insight into the aspects of the daily lives of nursing home residents with dementia.

scholarly journals Spiritual Distress Screening Using the Novel “Spirit 3” at Hospice Africa Uganda

2016 ◽  
Vol 2 (3_suppl) ◽  
pp. 46s-46s
Author(s):  
Brianna McSorley ◽  
Ludoviko Zirimenya ◽  
Kristen Cercone ◽  
Tifany Frazer ◽  
Alexis Visotcky ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Conflicts Of Interest ◽  
Metastatic Cancer ◽  
Clinical Care ◽  
Well Being ◽  
Assessment Tools ◽  
Distress Screening ◽  
Spiritual Distress ◽  
Spiritual Well Being ◽  
Core Questions

Abstract 3 Background: At Hospice Africa Uganda (HAU), patients' spiritual well-being is assessed in depth upon admission, but there are no rigorous assessment tools for regular spiritual distress screening in this setting. Our prior research demonstrated the “Spirit 8” assessment too cumbersome for routine use by HAU staff. The new “Spirit 3” includes three core questions thought to be most clinically relevant. The aims are to assess the feasibility of the Spirit 3 in routine screening for spiritual distress in hospice and to understand whether HAU staff value using the Spirit 3 in routine clinical practice. Methods: Between June 2014 and February 2015, the Spirit 3 was administered to consenting patients for four consecutive visits. The scale ranges from 3 to 15 with 15 representing an ideal state of spiritual well-being. For any patient unable to complete all assessments, a reason was recorded. Any staff intervention performed was recorded. Results: 49 patients were enrolled in the study and completed the first assessment. 41 (84%) of those patients had untreatable, metastatic cancer and 8 (16%) had HIV/AIDS. Twenty patients (41%) completed the second assessment; 11 the third (23%); and 8 patients (16%) completed all 4 assessments. There were no partially completed assessments. Eight patients died prior to the second assessment; the remainder were missed by research staff during clinical care and thus lost to follow-up. At 86% of visits, a staff member performed an intervention to address the reported spiritual distress. Upon study completion, 75% of the HAU staff wished to use the Spirit 3 in routine clinical care. Conclusion: Almost half of living patients completed the second assessment (49%). Attrition was due to difficulty in flagging charts rather than any barriers in acceptance by patients or staff. The majority of HAU staff wished to continue using the Spirit 3 suggesting feasibility in clinical practice. AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST: No COIs from the authors.

scholarly journals Selective narrowing of social networks across adulthood is associated with improved emotional experience in daily life

2014 ◽  
Vol 38 (2) ◽  
pp. 195-202 ◽  
Author(s):  
Tammy English ◽  
Laura L. Carstensen
Keyword(s):  
Social Networks ◽  
Social Network ◽  
Developmental Change ◽  
Daily Life ◽  
Longitudinal Design ◽  
Emotional Experience ◽  
Well Being ◽  
Regulatory Function ◽  
Socioemotional Selectivity Theory ◽  
Socioemotional Selectivity

Past research has documented age differences in the size and composition of social networks that suggest that networks grow smaller with age and include an increasingly greater proportion of well-known social partners. According to socioemotional selectivity theory, such changes in social network composition serve an antecedent emotion regulatory function that supports an age-related increase in the priority that people place on emotional well-being. The present study employed a longitudinal design with a sample that spanned the full adult age range to examine whether there is evidence of within-individual (developmental) change in social networks and whether the characteristics of relationships predict emotional experiences in daily life. Using growth curve analyses, social networks were found to increase in size in young adulthood and then decline steadily throughout later life. As postulated by socioemotional selectivity theory, reductions were observed primarily in the number of peripheral partners; the number of close partners was relatively stable over time. In addition, cross-sectional analyses revealed that older adults reported that social network members elicited less negative emotion and more positive emotion. The emotional tone of social networks, particularly when negative emotions were associated with network members, predicted daily emotional experience. These findings were robust after taking into account demographic variables and physical health. The implications of these findings are discussed in the context of socioemotional selectivity theory and related theoretical models.

Assessment of health related issues in individuals’, couples’, and families’ daily life

2008 ◽  
Vol 16 (3) ◽  
pp. 146-149 ◽  
Author(s):  
Meinrad Perrez ◽  
Michael Reicherts ◽  
Yves Hänggi ◽  
Andrea B. Horn ◽  
Gisela Michel ◽  
...  
Keyword(s):  
Emotion Regulation ◽  
Daily Life ◽  
Ecological Validity ◽  
Reliability And Validity ◽  
Well Being ◽  
Computer Assisted ◽  
Emotional States ◽  
Self Reports ◽  
Health Related ◽  
Lower Variability

Abstract. Most research in health psychology is based on retrospective self reports, which are distorted by recall biases and have low ecological validity. To overcome such limitations we developed computer assisted diary approaches to assess health related behaviours in individuals’, couples’ and families’ daily life. The event- and time-sampling-based instruments serve to assess appraisals of the current situation, feelings of physical discomfort, current emotional states, conflict and emotion regulation in daily life. They have proved sufficient reliability and validity in the context of individual, couple and family research with respect to issues like emotion regulation and health. As examples: Regarding symptom reporting curvilinear pattern of frequencies over the day could be identified by parents and adolescents; or psychological well-being is associated with lower variability in basic affect dimensions. In addition, we report on preventive studies to improve parental skills and enhance their empathic competences towards their baby, and towards their partner.

The Chemical Effect in Medicine Interaction Determining the Form and Speed of Psychical Involution in the Prosthetic Restauration in the Edentulous

2018 ◽  
Vol 69 (8) ◽  
pp. 2306-2310
Author(s):  
Aureliana Caraiane ◽  
Razvan Leata ◽  
Veronica Toba ◽  
Doina Vesa ◽  
Luana Andreea Macovei ◽  
...  
Keyword(s):  
Practical Importance ◽  
Psychosocial Problems ◽  
Well Being ◽  
The Elderly ◽  
Chemical Effect ◽  
Special Importance ◽  
Dramatic Form ◽  
Specific Disorders ◽  
The Individual ◽  
Made In

The progress made in dentistry during the latest decades is due, conceptually, to the new, systemic vision of man, which has also taken place in this field of medicine. In this context, the link between organic and psychic is indestructible. Thus illness is understood as a drama in which the somatic process has a psychic value, and the mental one has a body value. It is known that the morphological and functional integrity of the dental system, health and vigorousness, gives the individual a state of well-being that affects his somatic and psychic health, as any disturbance at this level entails repercussions in psychological and social behavior. Such a disruption is the total edification that seriously alters not only the dental system but the whole organism, putting various biological and psychosocial problems to the practitioner. The total expression represents not only a physical disability but also a psychological one. A special importance in studying psychological changes at total edentulous presents the psychological aspects of senile involution. This is not only a theoretical but also a practical importance due to the increase in the number of elderly people. Through the researches of the present paper we intend to present the reality of the psychological manifestations in the total edentation, which is objectified on different methods of psychodiagnosis in the first part, in order for the second part to be addressed to problems of prosthetic psychotherapy.The study comprises a group of 43 patients, of whom 24 were men and 19 women with total uni or bimaxilar edentation. Total edentation can be and is responsible for somatopsychic alterations, along with other pathogens, general, local, social, which sometimes can take a dramatic form, converting, where the area is also favorable, a pure somatic disease, for those who are not in psychopathy or even psychosis, although these latter cases are extremely rare and especially in youngsters, which would disrupt not only the person�s behavior as an individual, but also their status, function and social integrity. The treatment of dental and psychological complex is mandatory for any patient, but especially for the elderly, where recovery is more difficult, with disease-specific disorders adding to those of senescence.

Patient-Reported Outcome Measures in Colorectal Surgery: Construction of Core Measures Using Open-Source Research Method

2021 ◽  
pp. 155335062199887
Author(s):  
Alaa El-Hussuna ◽  
Ines Rubio-Perez ◽  
Monica Millan ◽  
Gianluca Pellino ◽  
Ionut Negoi ◽  
...  
Keyword(s):  
Colorectal Surgery ◽  
Outcome Measures ◽  
Short Form ◽  
Wide Spectrum ◽  
Core Outcome Set ◽  
Well Being ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Eortc Qlq

Purpose. The primary aim of the study was to review the existing literature about patient-reported outcome measures (PROMs) in colorectal cancer and IBD. The secondary aim was to present a road map to develop a core outcome set via opinion gathering using social media. Method. This study is the first step of a three-step project aimed at constructing simple, applicable PROMs in colorectal surgery. This article was written in a collaborative manner with authors invited both through Twitter via the #OpenSourceResearch hashtag. The 5 most used PROMs were presented and discussed as slides/images on Twitter. Inputs from a wide spectrum of participants including researchers, surgeons, physicians, nurses, patients, and patients’ organizations were collected and analyzed. The final draft was emailed to all contributors and 6 patients’ representatives for proofreading and approval. Results. Five PROM sets were identified and discussed: EORTC QLQ-CR29, IBDQ short health questionnaire, EORTC QLQ-C30, ED-Q5-5L, and Short Form-36. There were 315 tweets posted by 50 tweeters with 1458 retweets. Awareness about PROMs was generally limited. The general psycho-physical well-being score (GPP) was suggested and discussed, and then a survey was conducted in which more than 2/3 of voters agreed that GPP covers the most important aspects in PROMs. Conclusion. Despite the limitations of this exploratory study, it offered a new method to conduct clinical research with opportunity to engage patients. The general psycho-physical well-being score suggested as simple, applicable PROMs to be eventually combined procedure-specific, disease-specific, or symptom-specific PROMs if needed.

scholarly journals A Framework for a New Approach to Empower Users Through Low-Cost and Do-It-Yourself Assistive Technology

2021 ◽  
Vol 18 (6) ◽  
pp. 3039
Author(s):  
Thais Pousada García ◽  
Jessica Garabal-Barbeira ◽  
Patricia Porto Trillo ◽  
Olalla Vilar Figueira ◽  
Cristina Novo Díaz ◽  
...  
Keyword(s):  
Assistive Technology ◽  
Outcome Measures ◽  
Design Thinking ◽  
Low Cost ◽  
Well Being ◽  
Pilot Project ◽  
Assistive Device ◽  
Preliminary Results ◽  
Do It Yourself ◽  
Principles Of Design

Background: Assistive Technology (AT) refers to “assistive products and related systems and services developed for people to maintain or improve functioning and thereby to promote well-being”. Improving the process of design and creation of assistive products is an important step towards strengthening AT provision. Purpose: (1) to present a framework for designing and creating Low-Cost AT; (2) to display the preliminary results and evidence derived from applying the framework. Methodology: First, an evidence-based process was applied to develop and conceptualize the framework. Then, a pilot project to validate the framework was carried out. The sample was formed by 11 people with disabilities. The measure instruments were specific questionnaire, several forms of the Matching Person-Technology model, the Psychosocial Impact of Assistive Device Scale, and a tool to assess the usability and universal design of AT. Results: The framework integrates three phases: Identification (Design), Creation (Making the prototype), and Implementation (Outcome Measures), based on the principles of Design Thinking, and with a user-centered perspective. The preliminary results showed the coherence of the entire process and its applicability. The matching between person and device was high, representing the importance of involving the user in the design and selection of AT. Conclusions: The framework is a guide for professionals and users to apply a Low-Cost and Do-It-Yourself perspective to the provision of AT. It highlights the importance of monitoring the entire procedure and measuring the effects, by applying the outcome measures.

scholarly journals How hospitalized patients evaluate and report their pain together with nurses: A scoping review

2021 ◽  
pp. 205715852110134
Author(s):  
Bente Dale Malones ◽  
Sindre Sylte Kallmyr ◽  
Vera Hage ◽  
Trude Fløystad Eines
Keyword(s):  
Scoping Review ◽  
Pain Assessment ◽  
Health Professionals ◽  
Clinical Care ◽  
Hospitalized Patients ◽  
Assessment Tools ◽  
Post Surgery ◽  
Reliable Assessment ◽  
Scoping Reviews ◽  
The Relationship

Pain assessment tools are often used by patients to report their pain and by health professionals to assess patients’ reported pain. Although valid and reliable assessment of pain is essential for high-quality clinical care, there are still many patients who experience inappropriate pain management. The aim of this scoping review is to examine an overview of how hospitalized patients evaluate and report their pain in collaboration with nurses. Systematic searches were conducted, and ten research articles were included using the PRISMA guidelines for scoping reviews. Content analysis revealed four main themes: 1) the relationship between the patient and nurse is an important factor of how hospitalized patients evaluate and report their post-surgery pain, 2) the patient’s feelings of inconsistency in how pain assessments are administered by nurses, 3) the challenge of hospitalized patients reporting post-surgery pain numerically, and 4) previous experiences and attitudes affect how hospitalized patients report their pain. Pain assessment tools are suitable for nurses to observe and assess pain in patients. Nevertheless, just using pain assessment tools is not sufficient for nurses to obtain a comprehensive clinical picture of each individual patient with pain.

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