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Introducción: La calidad de vida relacionada con la salud (CVRS) y los estados de ánimo son indicadores cruciales del bienestar en adolescentes, pero su relación con estudiantes de Antioquia, Colombia, no ha sido ampliamente estudiada. Objetivo: Determinar la CVRS y los estados de ánimo en escolares de Antioquia-Colombia. Materiales y métodos: Estudio transversal con 1957 escolares de 9 a 20 años. Se aplicaron mediciones de CVRS, ansiedad, depresión, hostilidad y alegría, actividad física, comportamiento sedentario, apoyo social de padres y nivel socioeconómico. Resultados: La calidad de vida alta (CVA) es más elevada en hombres, personas con alegría, estudiantes con apoyo de padres, activos físicamente y personas de nivel socioeconómico alto y medio. AL aumentar un año de edad, disminuye en un 15 % la CVA, y al aumentar la depresión, la ansiedad y el comportamiento sedentario disminuye la CVA. Además, los niveles de depresión y ansiedad son mayores en mujeres, estudiantes mayores, sin apoyo de los padres y personas sedentarias. Conclusiones: La CVRS se asocia con estados de ánimo, actividad física, comportamiento sedentario y apoyo de los padres; mientras que los estados de ánimo se asocian con el sexo, el apoyo de los padres, la CVS y el sedentarismo.
Introduction: Even though health-related quality of life (HRQL) and mood states are key indicators of the well-being of adolescents, their relationship has not been analyzed in students from Antioquia, Colombia. Objective: To determine HRQL and mood states in schoolchildren from Antioquia. Materials and methods: A cross-sectional study was conducted on 1,957 schoolchildren and adolescents aged between 9 and 20 years. Measurements of HRQL, anxiety, depression, hostility and happiness, physical activity, sedentary behavior, parental social support, and socioeconomic status were applied. Results: A high quality of life (HQL) was observed more frequently in male participants, students with parental support, physically active, and those belonging to medium and high socioeconomic status. HQL decreased 15% as their age increased by one year. Also, HQL was reduced when depression, anxiety, and sedentary behavior increased. Furthermore, depression and anxiety levels were higher in women, older students, as well as in those without parental control and with sedentary behavior. Conclusions: HRQL is associated with mood states, physical activity, sedentary behavior, and parental support. In contrast, mood states are related to gender, parental support, HQL, and sedentary lifestyle.
Introdução: A qualidade de vida relacionada à saúde (CVRS) e os estados de humor são indicadores cruciais de bem-estar em adolescentes, mas sua relação com estudantes de Antioquia, Colômbia, não foi amplamente estudada. Objetivo: Determinar a CVRS e os estados de humor em escolares de Antioquia-Colômbia. Materiais e métodos: Estudo transversal com 1.957 escolares de 9 a 20 anos. Foram aplicadas medidas de QVRS, ansiedade, depressão, hostilidade e felicidade, atividade física, comportamento sedentário, apoio social dos pais e nível socioeconômico. Resultados: A alta qualidade de vida (CVA) é maior em homens, pessoas com alegria, estudantes com apoio parental, fisicamente ativos e pessoas de nível socioeconômico alto e médio. À medida que a idade aumenta em um ano, diminui em 15% o CVA, e ao aumentar a depressão, a ansiedade e o comportamento sedentário aumentam, o CVA diminui. Além disso, os níveis de depressão e ansiedade são mais elevados nas mulheres, nos estudantes mais velhos, sem apoio dos pais e nas pessoas sedentárias. Conclusões: A QVRS está associada a estados de humor, atividade física, comportamento sedentário e apoio parental; enquanto os estados de humor estão associados ao sexo, apoio parental, CVS e estilo de vida sedentário.
Subject(s)
Humans , Male , Female , Child , Adolescent , Young Adult , Health , Emotions , Happiness , HostilityABSTRACT
El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)
The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)
Subject(s)
Humans , Young Adult , Adult , Intellectual Disability , Quality of Life , Disabled Persons , Chile , Sampling StudiesABSTRACT
El paradigma de apoyos y el de calidad de vida se han transformado en guías fundamentales para los avances en el ámbito de la discapacidad intelectual (DI). Con base en una muestra de 93 personas adultas con DI, se analiza, desde un enfoque cuantitativo no experimental, la relación entre la calidad de vida y las necesidades de apoyo, aplicando la escala INICO-FEAPS y la escala de Intensidad de Apoyos (SIS) para cada constructo. Los principales resultados evidencian que existe una relación fuerte e indirecta entre calidad de vida y necesidades de apoyos, y también la relevancia de analizar dichos resultados desde variables como grado de discapacidad, sexo o nivel socioeconómico. La discusión permite inferir la necesidad de discutir nuevas estrategias en torno a categorías como el grado de discapacidad, la autodeterminación e inclusión social, como elementos facilitadores de la calidad de vida y apoyos desde un enfoque integral que contribuya al desarrollo de estrategias de programas sociales para la población con DI. (AU)
The support paradigm and the quality of life paradigm have become fundamental guides for progress in the field of Intellectual Disability (ID). Based on a sample of 93 adults with ID, the relationship between Quality of Life and Support Needs is analyzed from a non-experimental quantitative approach, applying the INICO-FEAPS scale and the SIS Support Intensity scale for each construct. The main results show that there is a strong and indirect relationship between quality of life and support needs, and the relevance of analyzing these results from variables such as the degree of disability, sex or socioeconomic level. The discussion allows us to infer the need to discuss new strategies around categories such as the degree of disability, self-determination and social inclusion, as facilitating elements of quality of life and supporting a comprehensive approach that contributes to the development of social program strategies for the population with ID. (AU)
Subject(s)
Humans , Young Adult , Adult , Intellectual Disability , Quality of Life , Disabled Persons , Chile , Sampling StudiesABSTRACT
INTRODUCTION: Diet is thought to play an important role in the clinical course and quality of life (QOL) of patients with inflammatory bowel disease (IBD). However, dietary habits of patients with IBD are still unknown. This case-control study aims to compare the dietary habits of patients with IBD to healthy controls and evaluate differences in disease severity and QOL. MATERIALS AND METHODS: Food frequency, severity scores using the Harvey-Bradshaw and Ulcerative colitis activity index, and QOL were assessed using online questionnaires. Dietary habits were compared for patients with active disease and remission and for those with low QOL (LQOL) and high QOL (HQOL). RESULTS: We recruited 61 patients with IBD and 101 controls. Significance was set at p = 0.05. Controls consumed significantly more daily calories (2546 vs. 1641, p = 0.001). However, patients with IBD consumed a higher percentage of carbohydrates (50% vs. 45%, p = 0.001), more red meat (p = 0.024), and less fiber, sucrose, and lactose (p = 0.001, 0.001, and 0.036). Patients with active disease had higher lipid intake, lower protein intake, and lower QOL (47 vs. 58, p = 0.001). Dietary differences between LQOL and HQOL mirrored those between active disease and remission. CONCLUSION: This study is the first to provide valuable insights into the nutritional profile of Lebanese patients with IBD.
Subject(s)
Diet , Inflammatory Bowel Diseases , Nutritional Status , Quality of Life , Severity of Illness Index , Humans , Case-Control Studies , Male , Female , Adult , Inflammatory Bowel Diseases/psychology , Middle Aged , Feeding Behavior/psychology , Surveys and Questionnaires , Colitis, Ulcerative/psychology , Energy Intake , Young AdultABSTRACT
Seat pressure measurements in wheelchair users have been available for some time; however, repeated measurements from a commercially available pressure mat over 90 min did not differ in the pressure-loaded measurement area or the coordinates of the center of pressure, even in participants who were able to reposition themselves in the wheelchair. The question therefore arises: to what extent are there other parameters that reflect the activity of wheelchair users with the pressure mat? To investigate this, a commercial pressure mat (BodiTrak®) was used to perform the measurements of pressure of 33 adult wheelchair-dependent people with spinal cord injury after 30 and 90 min sitting on the cushion. In addition to the standard output of the pressure mat, graph-based surface analyses (calculation of the area of maximum pressure, calculation of the pressure-loaded measurement area, and pressure-area ratio) was performed retrospectively using Python 3.7. The analysis of the measurements after 30 and 90 min was performed by distinguishing the participants between those who could actively change their position (N = 24) and those who could not (N = 9). The parameters of the pressure mat and the graph-based analyses remained unchanged for active participants. In participants who were unable to actively change their position, the area of maximum pressure and the pressure-area ratio (ratio of maximum pressure area and total pressure-loaded area) increased. Significant differences between minutes 30 and 90 are only found for the pressure-area ratio. Thus, when measuring the seat pressure of wheelchair users, the pressure-area ratio should be taken into account as it reflects the daily relief activities of wheelchair users.
Subject(s)
Pressure , Sitting Position , Wheelchairs , Humans , Male , Female , Adult , Middle Aged , Spinal Cord Injuries/physiopathology , Spinal Cord Injuries/rehabilitation , Equipment DesignABSTRACT
BACKGROUND: The coexistence of frailty and type 2 diabetes mellitus in the older population heightens the risk of adverse events. However, research on functional and wellness factors associated with frailty in this population is limited. PURPOSE: To investigate the associations of physical performance, functional dependency, physical activity, nutritional status, sleep, self-perceived health and depression with frailty in community-dwelling older adults with coexisting frailty and type 2 diabetes mellitus. DESIGN: Cross-sectional. METHODS: The study included 123 community-dwelling older adults (73.7 ± 6.0 years) with pre-frailty/frailty and type 2 diabetes mellitus. Physical performance (Short Physical Performance Battery), functional dependency (Barthel Index and Lawton & Brody), physical activity and inactivity (GeneActiv wrist-worn accelerometer), malnutrition risk (Mini Nutritional Assessment), sleep (Pittsburgh Sleep Quality Index), self-perceived health (EuroQoL 5-Dimension 3-Level) and depression (Yesavage 15-item-Geriatric-Depression-Scale) were evaluated through personal interviews. Principal component analysis (PCA) was performed to categorize the variables into components, and logistic regressions were used to propose the best-fitted model for each component. RESULTS: The PCA identified four components: (i) physical performance, with gait speed and leg mean velocity as the main variables associated with frailty; (ii) balance, showing significant associations with monopodal balance; (iii) daily activities, with moderate to vigorous physical activity and the Lawton and Brody score as the main variables associated with frailty within this component; and (iv) wellness factors, with nutritional status, self-perceived health and depression score as the primary variables associated with frailty. CONCLUSIONS: This research underscores the significance of physical function and daily activities as protective factors against frailty in community-dwelling older adults with coexisting frailty and type 2 diabetes mellitus. The health dimension contributes both protective and risk factors, emphasizing the need for comprehensive assessments in managing frailty in this population. REPORTING METHOD: The study adhered to the STROBE checklist. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.
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OBJECTIVE: This study explored the health-related quality of life (HRQL) and health behaviours of adolescents with sickle cell disease (SCD) and healthy siblings, drawing on Gap theory which suggests HRQL is the discrepancy between current and ideal selves. DESIGN: Twenty-three adolescents with SCD and 21 healthy siblings aged 13 to 17 years participated in eight focus groups. RESULTS: Thematic analysis identified three themes: learning to accept SCD, coping with SCD and influences on health behaviours. Adolescents appear to have normalised and adapted to SCD. Adolescents with SCD have learnt effective coping strategies, such as moderating engagement in exercise. Unlike heathy siblings, they were not encouraged to exercise by parents but were content with their level of participation. Both groups were influenced to exercise by role models or wanting to socialise, and influenced to drink alcohol by peers, but there was limited understanding of the potential negative impacts of alcohol on SCD. CONCLUSION: There does not appear to be a discrepancy between adolescents' current and ideal selves, providing optimism about their HRQL. Further consideration of engaging in healthy behaviours is needed, but it is important to strike a balance so that modifications to lifestyle do not impair HRQL.
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BACKGROUND: Chronic pruritus is a clinically heterogeneous symptom that manifests itself with varying duration, intensity, or quality. To date, there is no validated German-language instrument that systematically assesses the relevant parameters. With the support of the Pruritus Research Working Group (Arbeitsgemeinschaft Pruritusforschung, AGP), a questionnaire for the assessment of chronic pruritus (AGP questionnaire) was developed in 2008. The subsequently revised instrument, now called the German Pruritus Questionnaire, records pruritus-specific parameters such as localization, course, intensity and quality, anamnestic data on the general state of health, sociodemographic data, quality of life, and coping methods. It is to be validated in the study presented here. PATIENTS AND METHODS: The questionnaire was used in 366 patients with chronic pruritus of different etiologies from Germany (University Hospitals Heidelberg, Münster, Mainz, Erlangen, Giessen, private practice Bad Bentheim, TU Munich, Wiesbaden Kidney Center), Austria (Graz University Hospital) and Switzerland (Aarau Cantonal Hospital). RESULTS: The reliability for repeated completion (retest reliability) with regard to localization, first occurrence, and concomitant diseases showed high values for Cohen's kappa (> 0.8). The data on the retest reliability of the pruritus characteristics showed lower values (< 0.7). With regard to the measurability of practically relevant changes (change sensitivity), medium to strong effect sizes were found (0.09-0.19). A statistically significant differentiation of the pruritus etiologies based on the recorded parameters was not possible. CONCLUSIONS: The German Pruritus Questionnaire allows a comprehensive and structured recording of patient- and clinician-reported, relevant dimensions of chronic pruritus of different etiologies. Further adaptation and development are planned.
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AIMS: Patients with transthyretin amyloid cardiomyopathy (ATTR-CM) present with diverse left ventricular ejection fraction (LVEF). This study assessed tafamidis efficacy by baseline LVEF in the phase 3 Tafamidis in Transthyretin Cardiomyopathy Clinical Trial (ATTR-ACT) and its long-term extension (LTE) study. METHODS AND RESULTS: Patients were randomized to 30 months of tafamidis or placebo treatment in ATTR-ACT. On completion, patients could join an LTE study to receive tafamidis. All-cause mortality (death, heart transplant, or cardiac mechanical assist device implantation) from baseline to the end of follow-up was assessed in patients continuously treated with tafamidis (80 mg meglumine or 61 mg free acid) or delayed tafamidis treatment (placebo in ATTR-ACT; tafamidis in the LTE study) according to baseline LVEF (<50% or ≥50%). Supportive outcomes were evaluated over a shorter follow-up. Patients with baseline LVEF <50% (n = 177: 88 tafamidis- and 89 placebo-treated) had signs of more severe heart failure, a higher proportion were Black, and had variant ATTR-CM than those with LVEF ≥50% (n = 171: 85 tafamidis- and 86 placebo-treated). At the end of follow-up (median 60-64 months), all-cause mortality was numerically higher in patients with baseline LVEF <50%; however, consistent with supportive findings, continuous tafamidis treatment was associated with a 47% reduction in mortality risk compared with delayed tafamidis treatment in patients with LVEF <50% and ≥50% (hazard ratio 0.53 [95% confidence interval 0.367-0.758]; p < 0.001, and 0.53 [0.344-0.818]; p < 0.01, respectively). CONCLUSIONS: Early initiation of tafamidis is associated with reduced mortality in patients with ATTR-CM, irrespective of initial LVEF value. CLINICAL TRIAL REGISTRATION: ClinicalTrials.gov NCT01994889, NCT02791230.
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Infusions of home parenteral nutrition (HPN) are often cycled at night coinciding with sleep episodes. Adult consumers of HPN are known to experience poor sleep attributed to frequent awakenings and long durations of wakefulness after falling asleep. Consequently, most consumers do not meet recommendations for sleep duration and quality or daytime napping. The primary underlying pathophysiology resulting in sleep problems is nocturia; however, other factors also exist, including disruptions caused by medical equipment (ie, pump alarms), comorbid conditions, dysglycemia, and medication use. Early guidance on sleep is imperative because of the central role of sleep in physical health and wellbeing, including mitigating complications, such as infection risk, gastrointestinal problems, pain sensitivity, and fatigue. Clinicians should routinely inquire about the sleep of their patients and address factors known to perturb sleep. Nonpharmacologic opportunities to mitigate sleep problems include education on healthy sleep practices (ie, sleep hygiene); changes in infusion schedules, volumes, rates, and equipment; and, possibly, behavioral interventions, which have yet to be examined in this population. Addressing comorbid conditions, such as mood disorders, and nutrition deficiencies may also help. Pharmacologic interventions and technological advancement in HPN delivery are also needed. Research on sleep in this population is considered a priority, yet it remains limited at this time.
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The article examines the experiences of family caregivers engaged in the provision of long-term care for their relatives with complex health needs within the Latvian context. Semi-structured interviews were conducted with seven caregivers who provide care in cases of dementia, depression, schizophrenia, opioid use, Down syndrome and mild cognitive impairment. A thematic analysis of interview transcripts revealed common themes, such as the initial experiences when encountering a family member's disorder and the subsequent reactions, as well as the quest for support and resources. Variations mainly centered around differences in formal aspects and childhood experiences of care. Caregivers reported risk factors such as guilt, lack of support from family and friends, financial difficulties, deficiency of professional care and ignoring the caregiver's own needs. Awareness of personal resources, values and limits, coping with personal stigma and improved overall quality of life were identified as protective factors. The findings underscore several preventive measures that social and mental health services could implement to mitigate the adverse effects of caregiving on caregivers' lives.
Subject(s)
Adaptation, Psychological , Caregivers , Family , Humans , Caregivers/psychology , Latvia , Female , Male , Middle Aged , Aged , Family/psychology , Social Support , Interviews as Topic , Adult , Quality of Life , Qualitative Research , Social Stigma , Long-Term CareABSTRACT
WHAT IS THIS SUMMARY ABOUT?: This is a summary of findings from two research studies (known as clinical trials). The studies looked at how well a medicine called relugolix combination therapy worked in women with heavy menstrual bleeding (heavy bleeding during a period) with uterine fibroids (noncancerous or benign growths in the uterus). In this analysis of the studies, researchers looked at how patients self-reported their uterine fibroid symptoms before and after taking relugolix combination therapy. Researchers also looked at how patients self-reported the impact of uterine fibroids on their health-related quality of life before and after taking relugolix combination therapy. WHAT WERE THE RESULTS?: Women took either relugolix combination therapy or placebo (a pill that contains no medicine) by mouth once daily for 24 weeks. Women completed the Uterine Fibroid Symptom and Quality of Life questionnaire (where "quality of life" refers to the women's health-related quality of life related to uterine fibroids) before, during, and after treatment. The questionnaire let researchers see if the women felt that relugolix combination therapy decreased the burden of uterine fibroid symptoms and improved the women's health-related quality of life related to uterine fibroids. More women said that they felt less distress due to their uterine fibroid symptoms and that their health-related quality of life related to uterine fibroids was better after taking relugolix combination therapy compared with women who took placebo. WHAT DO THE RESULTS MEAN?: Relugolix combination therapy may lessen distress associated with uterine fibroid symptoms and improve health-related quality of life related to uterine fibroids.
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BACKGROUND: This systematic review examined the evidence on effectiveness and acceptability of cognitive behavioral therapy (CBT) interventions in improving quality of life (QoL) and psychological well-being of unaccompanied minors (UM). METHODS: PubMed, Scopus, Embase, ProQuest, PsycInfo, PsycArticles, and Open Dissertations databases were used to identify quantitative and qualitative studies. The Effective Public Health Practice Project (EPHPP) and Critical Appraisal Skills Programme (CASP) tools were used for quality assessment. Narrative synthesis and qualitative research synthesis were carried out to collate the findings. RESULTS: 18 studies were included. Two studies examined QoL, and five studies examined acceptability of interventions. Most quantitative studies (n = 10) were appraised as methodologically weak. Trauma-Focused CBT appears to have the most evidence demonstrating effectiveness in ameliorating symptoms of post-traumatic stress disorder, depression, and anxiety. Promising findings (i.e., increased mindfulness and psychological flexibility) were observed for third wave interventions but further replication is required. CONCLUSIONS: The literature is tainted by under-powered studies, lacking blinding, and follow-up assessments. Female UM remain largely underrepresented. This review calls for a drastic augmentation of high quality quantitative and qualitative research focusing on augmenting QoL and examining acceptability rather than merely aiming for psychological symptom reduction in UM to enhance overall well-being and functionality. The research protocol was registered in PROSPERO (registration number: CRD42021293881).
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PURPOSE: Parenteral nutrition (PN) can be an effective treatment to improve the nutritional status of patients with pancreatic cancer, but the effects of PN on quality of life (QoL) are still understudied. Therefore, we aimed at investigating whether the best supportive nutritional care (BSNC) in combination with PN at home compared to BSNC alone changed QoL in patients with advanced pancreatic cancer undergoing chemotherapy over a period of 7 weeks. METHODS: n = 12 patients in the PANUSCO study received nutritional counseling only (control group (CG)) and n = 9 patients were also given supportive PN (intervention group (IG)). The primary endpoint was the change of QoL (EORTC-QLQ-C30 and QLQ-PAN26) over 7 weeks between the groups. RESULTS: There was a significant worsening in social functioning in IG (p = 0.031) and a significant difference between groups in change of social functioning (p = 0.020). In all other domains of QoL, there was no significant difference between groups. Within groups, there was a significant improvement in the domain weight loss in IG (p = 0.031), showing that patients were less worried about their weight being too low. Furthermore, there was a significant difference in the change of BW over time between groups (p < 0.001) with IG showing an increase (p = 0.004) and CG showing no change (p = 0.578). CONCLUSION: The administration of PN had in one of five domains negative consequences on QoL. The decision to administer PN should always be made individually and together with the patient, and the impact on QoL should be included in the decision to administer PN.
Subject(s)
Pancreatic Neoplasms , Parenteral Nutrition , Quality of Life , Humans , Pancreatic Neoplasms/therapy , Pancreatic Neoplasms/psychology , Male , Female , Middle Aged , Aged , Parenteral Nutrition/methods , Nutritional Support/methods , Nutritional StatusABSTRACT
BACKGROUND: For a long time, chronic pruritus was considered difficult to treat. Modern therapy options and detailed guidelines have created new opportunities for patients to improve their quality of life. However, due to the complexity of the disease, the need for multimodal treatment remains. OBJECTIVES: This article aims to investigate whether dermatological rehabilitation offers additional benefits to those affected and whether it should therefore be part of the treatment concept for chronic pruritus. METHODS: After introduction of the pruritus program of a rehabilitation clinic, a prospective study is presented that focuses on the patient-relevant benefits of therapy. It used standardized questionnaires to record pruritus intensity, the presence of depression, anxiety, itch-related limitations, and quality of life in patients with chronic pruritus before and after rehabilitation. RESULTS: Of the patients surveyed, 91.7% achieved a patient-relevant benefit through rehabilitation. Pruritus intensity, depression, anxiety, itch-related limitations, and restrictions on quality of life decreased significantly. Almost half of all participating patients had been initially diagnosed more than 10 years ago. CONCLUSIONS: Dermatological rehabilitation with a multimodal concept for the treatment of chronic pruritus can help affected patients and should be part of the therapy concept. This should be done as early as possible before the disease progresses over a long period of time and makes treatment more difficult.
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Health-related quality of life is a key contributor to overall well-being, and this is becoming an increasingly prominent factor when making therapeutic choices in the management of ANCA-associated vasculitis (AAV). Progress in available therapeutic strategies for AAV has resulted in this historically acute disease with a potentially fatal short-term outcome, becoming a relapsing-remitting chronic disorder. This new perspective on AAV means that patient survival should no longer be considered as the only major treatment target. Additional outcomes in this context that should be portrayed in order to consider a therapeutic approach as successful include patient quality of life, as well as the burden of treatment-induced morbidity. Comorbidities and impaired quality of life in patients with AAV, as with many other autoimmune diseases, may be a consequence of the disease itself as well as a result of the therapy employed. The AAV disease process may induce organ damage, including kidney failure and structural lung damage, and increase the risk of cardiovascular disease. On top of this, treatments employed to manage the disease may contribute further to the overall comorbidities burden. Furthermore, pre-existing comorbidities can increase AAV severity and may also be contraindications that limit potential therapeutic options. Quality of life is another central topic that can have a huge impact on patient wellbeing as well as adherence to treatment. Ongoing monitoring of comorbidity risk and of quality of life is thus key for successful AAV management. This process, however, may be complicated; the identification of the correct parameters on which to focus is not always straightforward and, more importantly, it is sometimes the symptoms that may appear trivial to physicians that are most detrimental to a patient's quality of life. With these shifts in treatment capabilities and understanding of patient burden, it is necessary to adjust the treatment paradigm accordingly. Treatment success is no longer defined solely by the control of disease activity; treatment success requires holistic improvement determined through the assessment of all aspects of the disease, ranging from disease control to comorbidity risk through to the assessment of health-related quality of life. This review explores the burden of AAV itself as well as treatment-related side effects with a special focus on the tools available to measure outcomes. The management of AAV has entered a new era with a strong focus on both the management and prevention of comorbidities as well as patient-reported outcomes, both of which are now considered key factors in defining treatment success.
Subject(s)
Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis , Quality of Life , Humans , Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis/therapy , Treatment Outcome , Comorbidity , Disease ManagementABSTRACT
Background: Even though innumerable quality of life (QOL) questionnaires have been developed in palliative care, there is no gold standard assessment tool for QOL and no single questionnaire that fits all purposes and individuals. An important challenge to QOL assessments in palliative care is the highly diverse patient population with different diagnoses, disease states/prognosis, and languages. In an outpatient palliative care clinic population, FACIT-Pal-14 proved to be a valid and reliable scale in palliative care patients. Objectives: We aimed to (i) determine the psychometric properties of the Tagalog version of the Functional Assessment of Chronic Illness Therapy - Palliative Care - 14 (FACIT-Pal-14) and (ii) measure the Quality of Life (QOL) of Filipino cancer patients. Methods: This was a cross-sectional study. License for the use of the Tagalog version 4 of the FACIT-Pal-14 was requested from FACIT.org. To know the psychometric properties of the scales, Cronbach's alpha coefficient was used to assess reliability, and exploratory factor analysis, Pearson correlations, and independent samples T-test were used to determine validity. Results: The Tagalog FACIT-Pal-14 was administered to 500 Filipino cancer patients consulting at the outpatient department of a training and regional medical center. The participants were mostly female (65.5%), aged 64 years and younger (82.6%), and had breast cancer (53.2%), colorectal cancer (19.2%), and lung cancer (9.4%). The mean Tagalog FACIT-Pal-14 score was 47.35 out of 56 (SD=7.14). The Cronbach's alpha coefficient of the Tagalog version of FACIT-Pal-14 was 0.784. Significantly lower mean Tagalog FACIT-Pal-14 scores were found in patients with Karnofsky Performance Status (KPS) 70 and lower, and Eastern Cooperative Oncology Group Performance Status (ECOG-PS) 2 and above compared with patients with KPS 80 and higher and ECOG-PS 0-1. (t=3.439, p<.001). While the Tagalog FACIT-Pal-14 scores, KPS, and ECOG scores only revealed a very weak, positive correlation (r=0.095; p <0.05), this ability to distinguish between groups known to differ regarding performance status showed the construct validity of the Tagalog FACIT-Pal-14. Conclusions: In an outpatient oncology clinic population, the FACIT-Pal 14 showed evidence of reliability and construct validity for evaluating palliative care-specific QOL in Filipino cancer patients. Using this measure, Filipino cancer patients have a good QOL. Therefore, it is recommended that the Tagalog FACIT-Pal-14 be used on subsequent patient follow-ups to assess how their QOL would change over time so that the palliative care services provided will be suited to their needs.
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BACKGROUND: The health-related quality of life instrument with 8 items (HINT-8) was developed to measure health-related quality of life (HRQoL) in Korea. However, the HINT-8 has not yet been validated among the family caregivers of people with dementia (PwD). DESIGN: A cross-sectional pilot study. OBJECTIVE: The study aimed to examine the convergent and discriminant validity of the HINT-8 among family caregivers of individuals with dementia. SAMPLE: Forty-seven family caregivers of PwD. MEASUREMENTS: HINT-8 was compared with the 5-level EQ-5D (EQ-5D-5L) to assess its convergent and discriminant validity. Additionally, the association between the two instruments assessing HRQoL was examined using the short-form Bédard-Zarit Burden Interview (SZBI). RESULTS: The HINT-8 was a promising and valid HRQoL instrument for family caregivers of PwD. There was a significantly high correlation between the overall HINT-8 and EQ-5D-5L indices (r = 0.85, p < .001). The HINT-8 had acceptable psychometric properties compared to the commonly used EQ-5D-5L, as indicated by the subdomains associated with family caregivers' burden measured by the SZBI. CONCLUSION: Future studies should compare the HINT-8 with existing dementia carer-specific QoL instruments among a larger study sample to enhance its statistical power and confirm its reliability and structural validity.
ABSTRACT
Background: Anterior cruciate ligament injury of the knee is common and leads to decreased activity and risk of secondary osteoarthritis of the knee. Management of patients with a non-acute anterior cruciate ligament injury can be non-surgical (rehabilitation) or surgical (reconstruction). However, insufficient evidence exists to guide treatment. Objective(s): To determine in patients with non-acute anterior cruciate ligament injury and symptoms of instability whether a strategy of surgical management (reconstruction) without prior rehabilitation was more clinically and cost-effective than non-surgical management (rehabilitation). Design: A pragmatic, multicentre, superiority, randomised controlled trial with two-arm parallel groups and 1:1 allocation. Due to the nature of the interventions, no blinding could be carried out. Setting: Twenty-nine NHS orthopaedic units in the United Kingdom. Participants: Participants with a symptomatic (instability) non-acute anterior cruciate ligament-injured knee. Interventions: Patients in the surgical management arm underwent surgical anterior cruciate ligament reconstruction as soon as possible and without any further rehabilitation. Patients in the rehabilitation arm attended physiotherapy sessions and only were listed for reconstructive surgery on continued instability following rehabilitation. Surgery following initial rehabilitation was an expected outcome for many patients and within protocol. Main outcome measures: The primary outcome was the Knee Injury and Osteoarthritis Outcome Score 4 at 18 months post randomisation. Secondary outcomes included return to sport/activity, intervention-related complications, patient satisfaction, expectations of activity, generic health quality of life, knee-specific quality of life and resource usage. Results: Three hundred and sixteen participants were recruited between February 2017 and April 2020 with 156 randomised to surgical management and 160 to rehabilitation. Forty-one per cent (nâ =â 65) of those allocated to rehabilitation underwent subsequent reconstruction within 18 months with 38% (nâ =â 61) completing rehabilitation and not undergoing surgery. Seventy-two per cent (nâ =â 113) of those allocated to surgery underwent reconstruction within 18 months. Follow-up at the primary outcome time point was 78% (nâ =â 248; surgical, nâ =â 128; rehabilitation, nâ =â 120). Both groups improved over time. Adjusted mean Knee Injury and Osteoarthritis Outcome Score 4 scores at 18 months had increased to 73.0 in the surgical arm and to 64.6 in the rehabilitation arm. The adjusted mean difference was 7.9 (95% confidence interval 2.5 to 13.2; pâ =â 0.005) in favour of surgical management. The per-protocol analyses supported the intention-to-treat results, with all treatment effects favouring surgical management at a level reaching statistical significance. There was a significant difference in Tegner Activity Score at 18 months. Sixty-eight per cent (nâ =â 65) of surgery patients did not reach their expected activity level compared to 73% (nâ =â 63) in the rehabilitation arm. There were no differences between groups in surgical complications (nâ =â 1 surgery, nâ =â 2 rehab) or clinical events (nâ =â 11 surgery, nâ =â 12 rehab). Of surgery patients, 82.9% were satisfied compared to 68.1% of rehabilitation patients. Health economic analysis found that surgical management led to improved health-related quality of life compared to non-surgical management (0.052 quality-adjusted life-years, pâ =â 0.177), but with higher NHS healthcare costs (£1107, pâ <â 0.001). The incremental cost-effectiveness ratio for the surgical management programme versus rehabilitation was £19,346 per quality-adjusted life-year gained. Using £20,000-30,000 per quality-adjusted life-year thresholds, surgical management is cost-effective in the UK setting with a probability of being the most cost-effective option at 51% and 72%, respectively. Limitations: Not all surgical patients underwent reconstruction, but this did not affect trial interpretation. The adherence to physiotherapy was patchy, but the trial was designed as pragmatic. Conclusions: Surgical management (reconstruction) for non-acute anterior cruciate ligament-injured patients was superior to non-surgical management (rehabilitation). Although physiotherapy can still provide benefit, later-presenting non-acute anterior cruciate ligament-injured patients benefit more from surgical reconstruction without delaying for a prior period of rehabilitation. Future work: Confirmatory studies and those to explore the influence of fidelity and compliance will be useful. Trial registration: This trial is registered as Current Controlled Trials ISRCTN10110685; ClinicalTrials.gov Identifier: NCT02980367. Funding: This award was funded by the National Institute of Health and Care Research (NIHR) Health Technology Assessment programme (NIHR award ref: 14/140/63) and is published in full in Health Technology Assessment; Vol. 28, No. 27. See the NIHR Funding and Awards website for further award information.
The study aimed to find out whether it is better to offer surgical reconstruction or rehabilitation first to patients with a more long-standing injury of their anterior cruciate ligament in their knee. This injury causes physical giving way of the knee and/or sensations of it being wobbly (instability). The instability can affect daily activities, work, sport and can lead to arthritis. There are two main treatment options for this problem: non-surgical rehabilitation (prescribed exercises and advice from physiotherapists) or an operation by a surgeon to replace the damaged ligament (anterior cruciate ligament reconstruction). Although studies have highlighted the best option for a recently injured knee, the best management was not known for patients with a long-standing injury, perhaps occurring several months previously. Because the surgery is expensive to the NHS (around £100 million per year), it was also important to look at the costs involved. We carried out a study recruiting 316 non-acute anterior cruciate ligament-injured patients from 29 different hospitals and allocated each patient to either surgery or rehabilitation as their treatment option. We measured how well they did with special function and activity scores, patient satisfaction and costs of treatment. Patients in both groups improved substantially. It was expected that some patients in the rehabilitation group would want surgery if non-surgical management was unsuccessful. Forty-one per cent of patients who initially underwent rehabilitation subsequently elected to have reconstructive surgery. Overall, the patients allocated to the surgical reconstruction group had better results in terms of knee function and stability, activity level and satisfaction with treatment than patients allocated to the non-operative rehabilitation group. There were few problems or complications with either treatment option. Although the surgery was a more expensive treatment option, it was found to be cost-effective in the UK setting. The evidence can be discussed in shared decision-making with anterior cruciate ligament-injured patients. Both strategies of management led to improvement. Although a rehabilitation strategy can be beneficial, especially for recently injured patients, it is advised that later-presenting non-acute and more long-standing anterior cruciate ligament-injured patients undergo surgical reconstruction without necessarily delaying for a period of rehabilitation.
Subject(s)
Anterior Cruciate Ligament Injuries , Anterior Cruciate Ligament Reconstruction , Cost-Benefit Analysis , Humans , Male , Female , Anterior Cruciate Ligament Injuries/surgery , Anterior Cruciate Ligament Injuries/rehabilitation , Adult , United Kingdom , Anterior Cruciate Ligament Reconstruction/rehabilitation , Quality of Life , Quality-Adjusted Life Years , Middle Aged , Young Adult , State Medicine , Joint Instability/surgery , Joint Instability/rehabilitation , Adolescent , Technology Assessment, BiomedicalABSTRACT
BACKGROUND: Home-based rehabilitation is a cost-effective means of making services available for patients. The aim of this study is to determine the evidence in the literature on the effects of home-based neurostimulation in patients with stroke. METHOD: We searched PubMED, Embase, Web of Science, Scopus, and CENTRAL for randomized controlled trials on the subject matter using keywords such as stroke, electrical stimulation and transcranial direct current stimulation. Information on participants' characteristics and mean scores on the outcomes of interest were extracted. Risks of bias and methodological quality of the included studies were assessed using Cochrane Risks of bias tool and PEDro scale respectively. The data was analyzed using both narrative and quantitative syntheses. In the quantitative synthesis, meta-analysis was carried out using random effect model analysis. RESULT: The results showed that, home-based neurostimulation is superior to the control at improving upper limb muscle strength (SMD = 0.72, 95% CI = 0.08 to 1.32, p = 0.03), functional mobility (SMD = -0.39, 95% CI = -0.65 to 0.14, p = 0.003) and walking endurance (SMD = 0.33, 95% CI = 0.08 to 0.59, p = 0.01) post intervention; and upper limb motor function (SMD = 0.9, 95% CI = 0.10 to 1.70, p = 0.03), functional mobility (SMD = -0.30, 95% CI = -0.56 to -0.05, p = 0.02) and walking endurance (SMD = 0.33, 95% CI = 0.08 to 0.59, p = 0.01) at follow-up. CONCLUSIONS: Home-based neurostimulation can be used to improve upper and lower limb function after stroke.
