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1.
Acta Neurochir (Wien) ; 166(1): 166, 2024 Apr 03.
Artículo en Inglés | MEDLINE | ID: mdl-38565800

RESUMEN

BACKGROUND: The health-related quality of life (HRQoL) and cognition are important indicators for the quality of survival in patients with high-grade glioma (HGG). However, data on long-term survivors and their caregivers are scarce. We aim to investigate the interaction between cognition and HRQoL in long-term survivors, their caregivers' evaluations, and the effect on caregiver strain and burden. METHODS: 21 long-term HGG (8 WHO grade III and 13 WHO grade IV) survivors (survival ≥ 5 years) and 15 caregivers were included. Cognition (verbal memory, attention, executive functioning, and language), HRQoL, anxiety and depression, caregiver strain, and caregiver burden were assessed with standardized measures. Questionnaires were completed by patients and/or their caregivers. RESULTS: Mean survival was 12 years (grade III) and 8 years (grade IV). Cognition was significantly impaired with a large individual variety. Patients' general HRQoL was not impaired but all functioning scales were deviant. Patient-proxy agreement was found in most HRQoL subscales. Three patients (14%) showed indications of anxiety or depression. One-third of the caregivers reported a high caregiver strain or a high burden. Test scores for attention, executive functioning, language, and/or verbal memory were correlated with perceived global health status, cognitive functioning, and/or communication deficits. Caregiver burden was not related to cognitive deficits. CONCLUSIONS: In long-term HGG survivors maintained HRQoL seems possible even when cognition is impaired in a large variety at the individual level. A tailored approach is therefore recommended to investigate the cognitive impairments and HRQoL in patients and the need for patient and caregiver support.


Asunto(s)
Glioma , Calidad de Vida , Humanos , Calidad de Vida/psicología , Cuidadores/psicología , Glioma/psicología , Encuestas y Cuestionarios , Cognición , Sobrevivientes/psicología
2.
Noise Health ; 26(120): 25-29, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38570307

RESUMEN

OBJECTIVE: To explore the effects of music nursing as a complementary therapy on anxiety, fatigue, and quality of life in children with acute leukemia (AL). METHODS: This study included 150 children with AL admitted to our hospital from August 2021 to August 2023 and divided them into two groups based on treatment: the control (n = 76, received routine nursing) and observation (n = 74, received music nursing on the basis of routine nursing) groups. Comparison of groups was performed in terms of general information, anxiety, fatigue, and quality of life at admission (T0) and 1 month after admission (T1). RESULTS: No significant differences were observed in the general data between the two groups (P > 0.05). Anxiety, fatigue, and quality of life of the two groups also showed no significant differences at T0 (P > 0.05). The observation group showed significantly lower anxiety than the control group at T1 (P < 0.05). At T1, the observation group exhibited a lower fatigue degree compared with the control group (P < 0.05). At T1, the observation group attained higher scores on physiological and emotional dimensions of the quality of life compared with the control group, and the differences were statistically significant (P < 0.05). CONCLUSION: Music nursing for AL children, which has a certain clinical application value, can effectively reduce their anxiety and fatigue and improve their quality of life.


Asunto(s)
Terapias Complementarias , Leucemia , Musicoterapia , Música , Niño , Humanos , Calidad de Vida/psicología , Estudios Retrospectivos , Ansiedad/etiología , Ansiedad/terapia , Leucemia/terapia , Musicoterapia/métodos , Fatiga/etiología , Fatiga/terapia
3.
BMC Oral Health ; 24(1): 432, 2024 Apr 08.
Artículo en Inglés | MEDLINE | ID: mdl-38589820

RESUMEN

BACKGROUND: Based on the present global burden of oral diseases, unmet dental needs affect a more significant population worldwide. It is characterised by the need for dental care but receiving delayed or no care. The contributing factors include lack of knowledge about oral health, its consequences, and the availability of dental services. We need to find out the scale of the problem of unmet dental needs for the south Indian population. Therefore, the objective was to determine the relationship between the presence of oral disease and the quality of life-related to oral health using the OHIP-14 tool. METHODS: The unmet dental requirements of the south Indian population were determined using a cross-sectional questionnaire survey. Close-ended questions were used to obtain data from two investigators trained to record the answers from the patients. The data was collected using the OHIP-14 questionnaire, which consists of 14 items divided into seven domains with two questions each. Physical pain, psychological impairment, physical disability, psychological disability, social disability, and disability were all considered. An additional analysis of artificial neural network (ANN) was done. RESULTS: The response rate was 100 per cent. N = 1029 people replied to the questionnaire about their unmet dental needs. N = 497 (48.3%) were men, whereas N = 532 (51.7%) were women. The average age was 31.7811.72. As their current occupation, most of the included subjects (60.1%) were students. The respondents had no known personal habits and a mixed diet (94.93%). The average BMI was 24.022.59 (14-30.9). OHIP was present in 62.3% of the population. The average OHIP-14 severity score was 10.97. (8.54). The severity and degree of unmet dental need were substantial (p0.01) due to pain in the mouth/teeth/gums, malocclusion, and gum bleeding. The most common OHIP-14 domains affected by unmet oral needs were psychological discomfort, psychological limitation, social limitation, and feeling handicapped. The analysis of ANN revealed that high OHIP scores were primarily attributed to dental caries, poor oral health, and dental aesthetics. CONCLUSION: The severity and degree of unmet dental needs were significant among the south Indian population. The most common oral health status that impacted OHIP-14 domains were pain, malocclusion, and bleeding gums. These patients were significantly impacted by psychological discomfort and social limitations and felt handicapped.


Asunto(s)
Caries Dental , Maloclusión , Masculino , Humanos , Femenino , Adulto , Calidad de Vida/psicología , Caries Dental/epidemiología , Estudios Transversales , Salud Bucal , Dolor , Encuestas y Cuestionarios
4.
BMC Public Health ; 24(1): 980, 2024 Apr 08.
Artículo en Inglés | MEDLINE | ID: mdl-38589853

RESUMEN

BACKGROUND: Stress impacts healthy behaviours and may influence life and health-related quality of life (HRQOL). A stressful event occurred when the COVID-19 pandemic hit in March 2020. The present study aims to explore possible gender differences in stress, psychosocial factors (self-efficacy, self-esteem, loneliness), pain, HL, and HRQOL in parents of adolescents one year into the COVID-19 pandemic, and to explore possible associations between gender, demographic and psychosocial factors, pain, HL, and HRQOL. METHODS: Parents of adolescents aged 16-17 took part in the study from January to February 2021, when the COVID-19 pandemic was ongoing. Data on socio-demographics, stress, self-efficacy, self-esteem, pain, HL, loneliness, and HRQOL were collected. HRQOL was assessed using RAND-36. RESULTS: Among the 320 parents from the general population, the mean age was 47.6 (standard deviation (SD) = 4.6) years, 81% were mothers, 79% were married or cohabiting, 81% had a university degree, and the majority worked full time (78%) or part time (13%). The average pain score was low, 0.48 (95% CI [0.43-0.54]). However, 50% of the parents reported persistent pain and more mothers reported persistent pain compared to fathers (53% vs. 37%). The parents' mean (SD) score for RAND-36 was 52.1 (95% CI [51.2-53.0]) for the physical component summary (PCS) score and 51.0 (95% CI [50.0-52.1]) for the mental component summary (MCS) score. Mothers reported significantly lower scores for all the eight RAND-36 domains and the PCS and MCS scores. Adjusting for gender, age, living condition, education, pain, HL, self-efficacy and loneliness, we revealed no associations between stress and RAND-36-PCS. University education of four years or more was positively associated (B = 3.29, 95% CI: [0.78-5.80]) with RAND-36-PCS, while persistent pain was negatively associated (B = -7.13, CI: [-9.20- -5.06]). We identified a strong negative association between RAND-36-MCS and stress (B = -43.11, CI: [-48.83- -37.38]) and a positive association with older age (B = 0.21, CI: [ 0.04, 0.39)]. CONCLUSION: One year into the COVID-19 pandemic, we identified a strong negative association between stress and mental HRQOL, while pain was strongly negatively associated with physical HRQOL.


Asunto(s)
COVID-19 , Alfabetización en Salud , Humanos , Adolescente , Persona de Mediana Edad , Calidad de Vida/psicología , Encuestas y Cuestionarios , Pandemias , Dolor , Padres/psicología
5.
PLoS One ; 19(4): e0299879, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38598447

RESUMEN

BACKGROUND: A growing body of research supports dispositional mindfulness as important in influencing physical and mental health as well as physical activities in patients with chronic illnesses. Knee osteoarthritis (OA), which often causes health problems, is one of the most common chronic illnesses, but less is known about dispositional mindfulness in relation to this condition. OBJECTIVE: To explore possible associations between dispositional mindfulness and physical and mental health as well as physical activity in knee OA patients. METHODS: For this cross-sectional study, we recruited a purposive sample of orthopedic clinic patients in hospitals in Southern Taiwan. Instruments included the Mindful Attention Awareness Scale (MAAS) and the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC). Health-related characteristics were also measured. Demographic statistics, bivariate correlations, and multiple linear regression informed our exploration of potentially related factors for dispositional mindfulness. RESULTS: Participants with knee OA (N = 250) were mostly elderly (88%), female (70.5%), and married (84%). Marital status, perceived health status, depression, and physical activity were associated with dispositional mindfulness. Better perceived health, lower depression, and greater physical activity were significantly associated with greater dispositional mindfulness. However, the severity of symptoms, fear of falling, and exercise self-efficacy did not reach statistical significance in relation to dispositional mindfulness. CONCLUSION: Greater emphasis should be placed on the cultivation of mindfulness to enhance individuals' perceived health, decrease their depressive mood, and promote their engagement in physical activity, which could indirectly alleviate their experience of pain and improve their physical function, yielding better quality of life and well-being. Future research should focus on interventions to apply dispositional mindfulness in order to determine whether dispositional mindfulness can effectively improve physical and mental health as well as physical activity in those with knee OA.


Asunto(s)
Atención Plena , Osteoartritis de la Rodilla , Humanos , Femenino , Anciano , Estudios Transversales , Calidad de Vida/psicología , Accidentes por Caídas , Miedo , Enfermedad Crónica
6.
Ital J Pediatr ; 50(1): 76, 2024 Apr 19.
Artículo en Inglés | MEDLINE | ID: mdl-38637879

RESUMEN

BACKGROUND: Inherited epidermolysis bullosa (EB) is a clinically and genetically heterogeneous group of skin fragility disorders characterized by blister formation following minor trauma. Four major types are distinguished based on the level of cleavage within the skin. Most EB forms present severely disabling cutaneous and systemic signs and symptoms. Management relies on daily time-consuming and distressing topical medications, and symptomatic treatment of systemic findings. Disease manifestations, symptoms, and daily care strongly affect patient and caregiver quality of life (QoL). To date, there are two validated EB-specific questionnaires, the "Quality of Life in Epidermolysis Bullosa" (QOLEB) and the "Epidermolysis Bullosa Burden of Disease" (EB-BoD) for the evaluation of patient and family disease burden, respectively. The aim of our study was to develop an Italian translation of the two questionnaires and to pilot-test them. METHODS: The guidelines for translation and cross-cultural adaptation of health-related QoL measures were followed. Initially, two separate translations were generated for each questionnaire, and subsequently reconciled by an expert committee. This was followed by a back-translation process. The original texts and all translations underwent revision by the expert committee, resulting in definitive versions. The final versions were then tested in a pilot study involving cognitive debriefing in a group of 17 families, representative of all EB major types. RESULTS: The translation and reconciliation process led to minor changes to obtain semantic/idiomatic/cultural equivalence of the Italian versions with the original ones and to reconcile the questions with the answer options. The cognitive debriefing process showed a good understanding and did not require text modifications. CONCLUSIONS: The Italian versions of the QOLEB and EB-BoD provide valuable tools in everyday clinical practice of reference centers, and they allow the participation in multicenter international real-life observational studies as well as in controlled clinical trials. They enable the identification of disease-specific psychological and socioeconomic challenges for EB patients and their families, guiding targeted interventions to ensure appropriate and timely care.


Asunto(s)
Epidermólisis Ampollosa , Calidad de Vida , Humanos , Calidad de Vida/psicología , Proyectos Piloto , Epidermólisis Ampollosa/diagnóstico , Epidermólisis Ampollosa/terapia , Epidermólisis Ampollosa/psicología , Costo de Enfermedad , Encuestas y Cuestionarios , Italia
7.
Medicine (Baltimore) ; 103(16): e37819, 2024 Apr 19.
Artículo en Inglés | MEDLINE | ID: mdl-38640317

RESUMEN

Patients with cancer undergoing chemotherapy may have different cancer symptom clusters (CSC) that negatively impact their quality of life (QoL). These symptoms can sometimes arise from the disease itself or as a result of their cancer treatment. This study aimed to: examine the feasibility of longitudinal testing of CSC pattern and QoL in a sample of adult cancer patients undergoing outpatient chemotherapy; to identify the cardiovascular risk of patients with cancer undergoing outpatient chemotherapy; and to investigate the most prevalent CSC and their impact on the QoL of these patients. A longitudinal pilot study was conducted with eleven participants with a mean age of 56.09 years (range: 27-79) diagnosed with malignant neoplasm and undergoing outpatient chemotherapy treatment were evaluated during 6 cycles of chemotherapy. The CSC, cardiovascular risk, and QoL were assessed using the MSAS, FRS, and EQ-5D-3L™, respectively. Descriptive statistical and non-parametric bivariate analyses were performed. Patients who started chemotherapy treatment generally had a low to moderate cardiovascular risk and were likely to have a family history of hypertension, acute myocardial infarction, and stroke. Cardiovascular risk was found to be correlated with patient age (Rhos = 0.64; P = .033). In addition, the results showed a reduction in the QoL scoring over the 6 chemotherapy sessions. Regarding the most prevalent CSC, 2 clusters were identified: the neuropsychological symptom cluster (difficulty concentrating-sadness-worry) and the fatigue-difficulty sleeping cluster. Between the first and sixth chemotherapy sessions, there was a decrease in the perception of "mild" severity (P = .004) and an increase in the perception of "severe" and "very severe" (P = .003) for all symptoms. Adequate attention to CSC should be the basis for the accurate planning of effective interventions to manage the symptoms experienced by cancer patients.


Asunto(s)
Antineoplásicos , Enfermedades Cardiovasculares , Neoplasias , Adulto , Humanos , Persona de Mediana Edad , Antineoplásicos/efectos adversos , Calidad de Vida/psicología , Síndrome , Proyectos Piloto , Enfermedades Cardiovasculares/inducido químicamente , Enfermedades Cardiovasculares/epidemiología , Factores de Riesgo , Neoplasias/tratamiento farmacológico , Factores de Riesgo de Enfermedad Cardiaca
8.
BMC Psychol ; 12(1): 218, 2024 Apr 20.
Artículo en Inglés | MEDLINE | ID: mdl-38643160

RESUMEN

BACKGROUND: Attention Deficit/Hyperactivity Disorder (ADHD) is one of the most common disorders in school-aged children. Learning disorder (LD) is also one of the most important psychiatric disorders in children, which can often be associated with ADHD. In this study, we sought to compare self-esteem and quality of life in 8 to 12-year-old children with attention deficit/hyperactivity disorder with and without co-occurring learning disorders in order to emphasize the importance of attention and diagnosis in children with ADHD. METHOD: Among the 8- to 12-year-old outpatients referred to the child and adolescent psychiatry clinic of Omid Babol Clinic, 120 children aged 8 to 12 years with attention deficit/hyperactivity disorder whose disease was diagnosed by a child and adolescent psychiatry subspecialist. Among the tools used to collect information was the Colorado Learning Difficulties Questionnaire by Wilcott et al. (CLDQ), five-scale self-esteem test of Pepe et al. (1989) for children and quality-of-life questionnaire for 8-12-year-old children (PedsQL). RESULTS: This study investigated self-esteem and quality of life in children with ADHD (n = 120, 51.7% boys). Children with ADHD and learning disabilities reported significantly lower self-esteem and quality of life compared to those with ADHD alone. CONCLUSION: Considering the relatively high probability of co-occurrence of ADHD and learning disorders, if one of them is diagnosed in a child, it is possible to look for other disorders in the child in order to avoid the more severe negative effects that this co-occurrence can have on the child by diagnosing it as soon as possible.


Asunto(s)
Trastorno por Déficit de Atención con Hiperactividad , Discapacidades para el Aprendizaje , Masculino , Niño , Adolescente , Humanos , Femenino , Trastorno por Déficit de Atención con Hiperactividad/epidemiología , Trastorno por Déficit de Atención con Hiperactividad/diagnóstico , Calidad de Vida/psicología , Discapacidades para el Aprendizaje/epidemiología , Autoimagen , Encuestas y Cuestionarios
9.
Sleep Med ; 117: 209-215, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38593616

RESUMEN

OBJECTIVE: To examine mediating effects of sleep quality and duration on the association between T2D and QoL among Medicare beneficiaries 65+. METHODS: Data from the Medicare Health Outcome Survey (2015-2020) were used. The outcome was QoL (physical and mental health component-summary scores [PCS and MCS]) measured by the Veterans-Rand-12. The main predictor was diagnosed T2D. Mediators were sleep duration and sleep quality. The effect modifier was race/ethnicity. Structural Equation Modeling was used to estimate moderated-mediating effects of sleep quality and duration across race/ethnicity. RESULTS: Of the 746,400 Medicare beneficiaries, 26.7% had T2D, and mean age was 76 years (SD ± 6.9). Mean PCS score was 40 (SD ± 12.2), and mean MCS score was 54.0 (SD ± 10.2). Associations of T2D with PCS and MCS were negative and significant. For all racial/ethnic groups, those with T2D reported lower PCS. For White, Black, Asian, and Hispanic beneficiaries only, those with T2D reported lower MCS. The negative impact of T2D on PCS and MCS was mediated through sleep quality, especially very bad sleep quality. CONCLUSION: Improving sleep may lead to improvement in QoL in elderly adults with T2D.


Asunto(s)
Diabetes Mellitus Tipo 2 , Calidad de Vida , Adulto , Humanos , Anciano , Estados Unidos , Calidad de Vida/psicología , Medicare , Etnicidad , Sueño
10.
J Psychiatr Res ; 173: 317-325, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38574595

RESUMEN

OBJECTIVE: Obesity is associated with lower socioeconomic status. To date, however, scarce research has examined the prevalence, comorbidity, and incremental burden of obesity in relation to medical, psychiatric, functional, and homelessness measures among low-income veterans. METHODS: A nationally representative sample of 1004 low-income U.S. veterans was examined. Bivariate and multivariable analyses were conducted to assess relationships between obesity and medical and psychiatric comorbidities, functioning, and homelessness measures. RESULTS: The prevalence estimate of obesity among low-income U.S. veterans was 38.2% (confidence interval (CI): 34.2; 42.2), which is higher than previously reported for the general U.S. veteran population. It was particularly high among young, females with children. Obesity was associated with co-occurring medical (chronic pain, diabetes, sleep disorders, high blood pressure, heart disease) and psychiatric (trauma- and anxiety-related) conditions, poor functioning, and current psychiatric medication use. Veterans with obesity were less likely to have current savings and more likely to have current debt. They also were more likely to have experienced evictions and foreclosures and less likely to use active coping or positive reframing as a means of dealing with stressful situations. CONCLUSION: The prevalence of obesity among U.S. veterans is high. Specific demographic groups particularly vulnerable to developing obesity warrant targeted interventions. Modifying weight management programs, understanding coping styles, and assessing, monitoring, and treating obesity in low-income veterans may help improve overall health and quality of life in multiple domains.


Asunto(s)
Personas con Mala Vivienda , Veteranos , Femenino , Niño , Humanos , Veteranos/psicología , Calidad de Vida/psicología , Prevalencia , Obesidad/epidemiología , Obesidad/psicología
11.
PLoS One ; 19(4): e0297097, 2024.
Artículo en Inglés | MEDLINE | ID: mdl-38635604

RESUMEN

The COVID-19 pandemic imposed additional and specific challenges on the lives and wellbeing of informal unpaid carers. Addressing an important gap in the existing literature, this systematic review (prospectively registered with PROSPERO CRD42022376012) synthesises and evaluates the quantitative evidence examining the association between unpaid caregiving and mental health (compared to non-caring), during the pandemic. Five databases were searched (Medline, PsycInfo, EMBASE, Scopus, Web of Science) from Jan 1, 2020, to March 1, 2023. Population-based, peer-reviewed quantitative studies using any observational design were included, with screening, data extraction and quality assessment (amended NOS) independently conducted by two reviewers. Of the 3,073 records screened, 20 eligible studies (113,151 participants) were included. Overall quality of evidence was moderate. Narrative synthesis was complemented by Effect-direction and Albatross plots (given significant between-study heterogeneity precluded meta-analysis). Results indicate that the mental health of informal carers, already poorer pre-COVID compared to non-caregivers, was disproportionally impacted as a result of the pandemic and its associated public health containment measures. This review highlights the vulnerability of this group and should motivate political will and commensurate policies to ensure unpaid caregivers are better supported now, in the medium term, and crucially if, and when, another global public health emergency emerges.


Asunto(s)
COVID-19 , Salud Mental , Humanos , COVID-19/epidemiología , Calidad de Vida/psicología , Pandemias , Cuidadores/psicología
12.
Health Qual Life Outcomes ; 22(1): 30, 2024 Apr 01.
Artículo en Inglés | MEDLINE | ID: mdl-38561752

RESUMEN

BACKGROUND: The involvement of quality of life as the UNAIDS fourth 90 target to monitor the global HIV response highlighted the development of patient-reported outcome (PRO) measures to help address the holistic needs of people living with HIV/AIDS (PLWHA) beyond viral suppression. This study developed and tested preliminary measurement properties of a new patient-reported outcome (PROHIV-OLD) measure designed specifically to capture influences of HIV on patients aged 50 and older in China. METHODS: Ninety-three older people living with HIV/AIDS (PLWHA) were interviewed to solicit items and two rounds of patient cognitive interviews were conducted to modify the content and wording of the initial items. A validation study was then conducted to refine the initial instrument and evaluate measurement properties. Patients were recruited between February 2021 and November 2021, and followed six months later after the first investigation. Classical test theory (CTT) and item response theory (IRT) were used to select items using the baseline data. The follow-up data were used to evaluate the measurement properties of the final instrument. RESULTS: A total of 600 patients were recruited at the baseline. Of the 485 patients who completed the follow-up investigation, 483 were included in the validation sample. The final scale of PROHIV-OLD contained 25 items describing five dimensions (physical symptoms, mental status, illness perception, family relationship, and treatment). All the PROHIV-OLD dimensions had satisfactory reliability with Cronbach's alpha coefficient, McDonald's ω, and composite reliability of each dimension being all higher than 0.85. Most dimensions met the test-retest reliability standard except for the physical symptoms dimension (ICC = 0.64). Confirmatory factor analysis supported the structural validity of the final scale, and the model fit index satisfied the criterion. The correlations between dimensions of PROHIV-OLD and MOS-HIV met hypotheses in general. Significant differences on scores of the PROHIV-OLD were found between demographic and clinical subgroups, supporting known-groups validity. CONCLUSIONS: The PROHIV-OLD was found to have good feasibility, reliability and validity for evaluating health outcome of Chinese older PLWHA. Other measurement properties such as responsiveness and interpretability will be further examined.


Asunto(s)
Síndrome de Inmunodeficiencia Adquirida , Calidad de Vida , Humanos , Persona de Mediana Edad , Anciano , Calidad de Vida/psicología , Encuestas y Cuestionarios , Reproducibilidad de los Resultados , Medición de Resultados Informados por el Paciente , China , Psicometría/métodos
13.
Dtsch Med Wochenschr ; 149(8): 447-453, 2024 Apr.
Artículo en Alemán | MEDLINE | ID: mdl-38565118

RESUMEN

Comprehensive Cancer Care stands for a concept of broad care providing substantial benefits to cancer patients. Beside prevention of cancer as first pillar and curative therapy as second pillar, comprehensive care also encompasses palliative care representing a third pillar providing service for incurable cancer patients burdened with physical symptoms and psychological, social and spiritual needs. This article describes the integration of palliative medicine into comprehensive cancer care for patients with gastrointestinal cancer.


Asunto(s)
Neoplasias Gastrointestinales , Neoplasias , Humanos , Cuidados Paliativos/psicología , Neoplasias/terapia , Neoplasias Gastrointestinales/terapia , Calidad de Vida/psicología
14.
Brain Impair ; 252024 Jan.
Artículo en Inglés | MEDLINE | ID: mdl-38566292

RESUMEN

Background Acoustic neuromas (ANs) are consistently associated with decreased quality of life (QOL) related to the physical and psychosocial impacts of symptoms experienced from the tumour and its treatment. This study explored patient-reported experiences of ANs in New Zealand, with a focus on the impact on QOL and the provision of information, support and services. Methods A mixed methods approach was taken, conducting an online community survey that included the Penn Acoustic Neuroma Quality of Life Scale (N = 52). Those who indicated interest were offered semi-structured interviews after the survey (N = 17), which were analysed using content analysis. Results A negative impact on QOL was found, highlighting five key themes in the experiences of people: (1) ongoing physical, social and psychological impacts; (2) information and support from the medical system; (3) autonomy and decision-making; (4) the importance of peer support; and (5) remaining positive - life goes on. Conclusions Our findings indicate areas for improvement that may benefit people's healthcare experience and QOL. Both quantitative and qualitative results identified gaps associated with person-centred care and the need for information, education, emotional support and access to services. Recommendations include a need for more information (verbal and written) during all stages of diagnosis and treatment, shared decision-making and increased access to allied health, including psychological services and support groups.


Asunto(s)
Neuroma Acústico , Humanos , Neuroma Acústico/terapia , Calidad de Vida/psicología , Grupos de Autoayuda , Nueva Zelanda
15.
BMC Geriatr ; 24(1): 306, 2024 Apr 02.
Artículo en Inglés | MEDLINE | ID: mdl-38565998

RESUMEN

BACKGROUND: The coronavirus disease (COVID-19) pandemic has greatly impacted older adults, resulting in many deaths. The impact of lifestyle and mental health on vulnerable groups, such as older adults, can be large and long lasting. Therefore, this study aimed to investigate the effects of COVID-19 confirmation on cognition, lifestyle, mental health, and quality of life in adults aged 55 years. METHODS: The sample consisted of 111 people in the COVID group and 189 people in the non-COVID group aged over 55 years in South Korea. An online survey was conducted between January and May 2022. Participants responded to the following assessment tools: Yonsei Lifestyle Profile, Prospective and Retrospective Memory (PRMQ), Subjective Memory Complaints Questionnaire (SMCQ), Visual Analogue Scale, Patient Health Questionnaire-9 (PHQ-9), Insomnia Severity Index (ISI), Fear of COVID-19 Scale (FCV-19 S), and the World Health Organization Quality of Life Scale abbreviated version (WHOQOL-BREF). Differences in lifestyle, cognition, depression, anxiety, and quality of life were compared between the two groups. RESULTS: There were significant differences in physical activity, diet, the total score of the PRMQ, PM (a sub-score of the PRMQ), PHQ-9, Korean version of the ISI (ISI-K), and WHOQOL-BREF scores between the COVID and non-COVID groups. However, there were no significant differences in activity participation, Self-Rating Anxiety Scale (SAS), or FCV-19 S between groups. CONCLUSIONS: The study confirms that COVID-19 negatively affects memory, physical activity, diet, quality of life, depression, and insomnia in the older adults. Therefore, this study implicated that prevention and intervention strategies required improving the memory, lifestyle, and mental health of older adults with COVID-19. TRIAL REGISTRATION: The study was conducted in accordance with the Declaration of Helsinki, and approved by the Institutional Review Board of Yonsei university in Korea (Registration number: 1041849-202112-SB-226-03, Date of registration: 01042022).


Asunto(s)
COVID-19 , Trastornos del Inicio y del Mantenimiento del Sueño , Humanos , Anciano , Calidad de Vida/psicología , Estudios Transversales , COVID-19/epidemiología , Salud Mental , Estudios Retrospectivos , Estudios Prospectivos , Cognición , Depresión/diagnóstico , Depresión/epidemiología , Depresión/psicología , Estilo de Vida
16.
Immunol Allergy Clin North Am ; 44(2): 265-280, 2024 May.
Artículo en Inglés | MEDLINE | ID: mdl-38575222

RESUMEN

Measuring health-related quality of life (HRQOL) gained relevance in research and clinical practice in patients with eosinophilic esophagitis. The physical discomfort and social and psychological consequences of this food-related disease substantially affect HRQOL. Determinant of an impaired HRQOL include symptom severity, disease duration, biological disease activity, and psychological factors. Patients prioritize symptom relief and improved HRQOL as treatment objectives. Available treatment options can address these goals; however, there is a suboptimal adherence to treatment. There is a need for enhanced patient guidance and education. The assessment of HRQOL will help to prioritize patient's needs in management.


Asunto(s)
Enteritis , Eosinofilia , Esofagitis Eosinofílica , Gastritis , Humanos , Calidad de Vida/psicología , Esofagitis Eosinofílica/diagnóstico , Esofagitis Eosinofílica/terapia , Alimentos
17.
JMIR Res Protoc ; 13: e53307, 2024 Apr 23.
Artículo en Inglés | MEDLINE | ID: mdl-38652520

RESUMEN

BACKGROUND: Cancer is a life-threatening, stressful event, particularly for young adults due to delays and disruptions in their developmental transitions. Cancer treatment can also cause adverse long-term effects, chronic conditions, psychological issues, and decreased quality of life (QoL) among young adults. Despite numerous health benefits of health behaviors (eg, physical activity, healthy eating, no smoking, no alcohol use, and quality sleep), young adult cancer survivors report poor health behavior profiles. Determining the associations of stress (either cancer-specific or day-to-day stress), health behaviors, and QoL as young adult survivors transition to survivorship is key to understanding and enhancing these survivors' health. It is also crucial to note that the effects of stress on health behaviors and QoL may manifest on a shorter time scale (eg, daily within-person level). Moreover, given that stress spills over into romantic relationships, it is important to identify the role of spouses or partners (hereafter partners) in these survivors' health behaviors and QoL. OBJECTIVE: This study aims to investigate associations between stress, health behaviors, and QoL at both within- and between-person levels during the transition to survivorship in young adult cancer survivors and their partners, to identify the extent to which young adult survivors' and their partners' stress facilitates or hinders their own and each other's health behaviors and QoL. METHODS: We aim to enroll 150 young adults (aged 25-39 years at the time of cancer diagnosis) who have recently completed cancer treatment, along with their partners. We will conduct a prospective longitudinal study using a measurement burst design. Participants (ie, survivors and their partners) will complete a daily web-based survey for 7 consecutive days (a "burst") 9 times over 2 years, with the bursts spaced 3 months apart. Participants will self-report their stress, health behaviors, and QoL. Additionally, participants will be asked to wear an accelerometer to assess their physical activity and sleep during the burst period. Finally, dietary intake (24-hour diet recalls) will be assessed during each burst via telephone by research staff. RESULTS: Participant enrollment began in January 2022. Recruitment and data collection are expected to conclude by December 2024 and December 2026, respectively. CONCLUSIONS: To the best of our knowledge, this will be the first study that determines the interdependence of health behaviors and QoL of young adult cancer survivors and their partners at both within- and between-person levels. This study is unique in its focus on the transition to cancer survivorship and its use of a measurement burst design. Results will guide the creation of a developmentally appropriate dyadic psychosocial or behavioral intervention that improves both young adult survivors' and their partners' health behaviors and QoL and potentially their physical health. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/53307.


Asunto(s)
Supervivientes de Cáncer , Conductas Relacionadas con la Salud , Calidad de Vida , Estrés Psicológico , Humanos , Calidad de Vida/psicología , Masculino , Femenino , Estrés Psicológico/psicología , Adulto , Supervivientes de Cáncer/psicología , Adulto Joven , Supervivencia , Encuestas y Cuestionarios , Esposos/psicología
18.
BMC Psychiatry ; 24(1): 270, 2024 Apr 11.
Artículo en Inglés | MEDLINE | ID: mdl-38605327

RESUMEN

BACKGROUND: Adolescents with type 1 diabetes mellitus suffer from diabetes distress and poor health-related quality of life (HRQOL) since living with the condition that differentiates them from their peers. The present study investigated the effects of peer support and stress on diabetes distress and HRQOL and whether positive coping mediated the effects. METHODS: We used a prospective study design. A total of 201 adolescents with type 1 diabetes mellitus from 20 cities in 4 provinces were recruited.Participants complete two separate surveys at approximately 18-month intervals. The scales employed at both Time 1 and Time 2 included the Diabetes-Specific Peer Support Measure, Diabetes Stress Questionnaire for Youths, Simplified Coping Style Questionnaire, 5-item Problem Areas in Diabetes Scale, and the Diabetes Quality of Life for Youth scale. RESULTS: Baseline peer stress directly predicted diabetes distress and HRQOL at 18 months, even controlling for age, gender, and peer support. However, the direct effect of baseline peer support on 18-month diabetes distress and HRQOL was insignificant. Baseline peer support indirectly affected diabetes distress and HRQOL at 18 months through positive coping, indicating that positive coping plays a mediating role. CONCLUSION: The findings suggest that peer social relationships, especially peer stress, and positive coping are promising intervention targets for adolescents facing challenges in psychosocial adaptation.


Asunto(s)
Diabetes Mellitus Tipo 1 , Distrés Psicológico , Humanos , Adolescente , Diabetes Mellitus Tipo 1/psicología , Calidad de Vida/psicología , Estudios Longitudinales , Adaptación Psicológica , Estudios Prospectivos , Relaciones Interpersonales , Estrés Psicológico/psicología
19.
Sci Rep ; 14(1): 8632, 2024 04 15.
Artículo en Inglés | MEDLINE | ID: mdl-38622186

RESUMEN

More attention has gone to researching the cancer-related fatigue (CRF)-sleep disturbance (SD)-psychological distress (PD) symptom cluster in breast cancer patients during the chemotherapy period, but the change trend and heterogeneous development track in the whole treatment stage remain unclear, and it is also unclear whether the appearance of and changes in one symptom cause changes in other symptoms and quality of life (QoL). This study, using breast cancer patients' data collected through a validated questionnaire, examined the relationships between SD, CRF, PD, and QoL using latent growth modeling analyses. CRF developmental trajectories showed an upward trend over five surveys (slope = 0.649, P < 0.001); PD showed a significant weakening trend (slope = - 0.583, P < 0.001); SD showed an increasing trend (slope = 0.345, P < 0.001), and QoL showed a statistically significant weakening trend (slope = - 0.373, P < 0.001). The initial CRF (coefficient = - 0.233, P < 0.01), PD (coefficient = - 0.296, P < 0.01), and SD (coefficient = - 0.388, P < 0.001) levels had a statistically significant negative effect on initial QoL level. The linear development rate of PD was statistically significant and negatively affected that of QoL (coefficient = - 0.305, P < 0.05), whereas the quadratic development rate of SD negatively affected that of QoL (coefficient = - 0.391, P < 0.05). Medical staff should identify the change characteristics of different variables based on SD, CRF, PD, and QoL change trajectories, and advance the intervention time, as changes in variables affect other variables' subsequent changes.


Asunto(s)
Neoplasias de la Mama , Humanos , Femenino , Neoplasias de la Mama/tratamiento farmacológico , Calidad de Vida/psicología , Estudios Prospectivos , Sueño , Fatiga/etiología , Fatiga/psicología
20.
BMC Public Health ; 24(1): 1045, 2024 Apr 15.
Artículo en Inglés | MEDLINE | ID: mdl-38622559

RESUMEN

BACKGROUD: To investigate the factors influencing fertility quality of life in infertile men, constructing a structural equation model of the factors influencing fertility quality of life in infertile men, and to provide suggested measures for improving fertility quality of life in infertile men. METHODS: It is a Observational study. Infertile men (n = 250) attending a fertility centre in a hospital in Xinjiang, matched 1:2 men with no obvious male factor in the control group (n = 500).The Quality of Fertility Life Scale, the Social Support Scale, the Fertility Stress Scale and the Positive Attention Awareness Scale were used to conduct the survey. The model was constructed by applying the maximum likelihood estimation method in Mplus 8.3 software, to explore the factors influencing the quality of reproductive life of infertile men through path analyses. Differences between the case and control groups were statistically significant (P < 0.05) in terms of total fertility quality of life scores, core entry dimensions, affective responses, physical and mental relationships, selective treatment dimensions, and treatment tolerance. RESULTS: Past medical history, history of exposure to hazardous environments, health insurance reimbursement, social support, fertility stress, and mindfulness are important factors affecting the quality of fertility life of infertile men. CONCLUSION: The quality of fertility life of infertile men is not optimistic. By improving the level of mindfulness, fertility stress, and social support, we propose appropriate measures to improve the quality of fertility life of infertile men. These measures can improve their confidence in clinical diagnosis and infertility treatment, enabling them to cope positively with these challenges.


Asunto(s)
Infertilidad , Calidad de Vida , Humanos , Masculino , Calidad de Vida/psicología , Estudios Transversales , Fertilidad , Infertilidad/psicología , Encuestas y Cuestionarios
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