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1.
Acta Neurochir (Wien) ; 166(1): 166, 2024 Apr 03.
Artigo em Inglês | MEDLINE | ID: mdl-38565800

RESUMO

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.


Assuntos
Glioma , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Cuidadores/psicologia , Glioma/psicologia , Inquéritos e Questionários , Cognição , Sobreviventes/psicologia
2.
Noise Health ; 26(120): 25-29, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38570307

RESUMO

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.


Assuntos
Terapias Complementares , Leucemia , Musicoterapia , Música , Criança , Humanos , Qualidade de Vida/psicologia , Estudos Retrospectivos , Ansiedade/etiologia , Ansiedade/terapia , Leucemia/terapia , Musicoterapia/métodos , Fadiga/etiologia , Fadiga/terapia
3.
Medicine (Baltimore) ; 103(16): e37819, 2024 Apr 19.
Artigo em Inglês | MEDLINE | ID: mdl-38640317

RESUMO

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.


Assuntos
Antineoplásicos , Doenças Cardiovasculares , Neoplasias , Adulto , Humanos , Pessoa de Meia-Idade , Antineoplásicos/efeitos adversos , Qualidade de Vida/psicologia , Síndrome , Projetos Piloto , Doenças Cardiovasculares/induzido quimicamente , Doenças Cardiovasculares/epidemiologia , Fatores de Risco , Neoplasias/tratamento farmacológico , Fatores de Risco de Doenças Cardíacas
4.
Dtsch Med Wochenschr ; 149(8): 447-453, 2024 Apr.
Artigo em Alemão | MEDLINE | ID: mdl-38565118

RESUMO

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.


Assuntos
Neoplasias Gastrointestinais , Neoplasias , Humanos , Cuidados Paliativos/psicologia , Neoplasias/terapia , Neoplasias Gastrointestinais/terapia , Qualidade de Vida/psicologia
5.
Brain Impair ; 252024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38566292

RESUMO

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.


Assuntos
Neuroma Acústico , Humanos , Neuroma Acústico/terapia , Qualidade de Vida/psicologia , Grupos de Autoajuda , Nova Zelândia
6.
JMIR Res Protoc ; 13: e53307, 2024 Apr 23.
Artigo em Inglês | MEDLINE | ID: mdl-38652520

RESUMO

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.


Assuntos
Sobreviventes de Câncer , Comportamentos Relacionados com a Saúde , Qualidade de Vida , Estresse Psicológico , Humanos , Qualidade de Vida/psicologia , Masculino , Feminino , Estresse Psicológico/psicologia , Adulto , Sobreviventes de Câncer/psicologia , Adulto Jovem , Sobrevivência , Inquéritos e Questionários , Cônjuges/psicologia
7.
Sci Rep ; 14(1): 8632, 2024 04 15.
Artigo em Inglês | MEDLINE | ID: mdl-38622186

RESUMO

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.


Assuntos
Neoplasias da Mama , Humanos , Feminino , Neoplasias da Mama/tratamento farmacológico , Qualidade de Vida/psicologia , Estudos Prospectivos , Sono , Fadiga/etiologia , Fadiga/psicologia
8.
Glob Health Action ; 17(1): 2325728, 2024 Dec 31.
Artigo em Inglês | MEDLINE | ID: mdl-38596846

RESUMO

OBJECTIVES: The study aimed to investigate the prevalence and factors associated with poor health-related quality of life in adults with cancer in Uganda. METHODS: This cross-sectional study surveyed 385 adult patients (95% response rate) with various cancers at a specialised oncology facility in Uganda. Health-related quality of life was measured using the EORTC QLQ-C30 in the Luganda and English languages. Predetermined validated clinical thresholds were applied to the instrument in order to identify patients with poor health-related quality of life, that is, functional impairments or symptoms warranting concern. Multivariable logistic regression was used to identify factors associated with poor health-related quality of life in six subscales: Physical Function, Role Function, Emotional Function, Social Function, Pain and Fatigue. RESULTS: The mean age of the patients was 48 years. The majority self-reported poor functioning ranging between 61% (Emotional Function) to 79% (Physical Function) and symptoms (Fatigue 63%, Pain 80%) at clinically concerning levels. These patients were more likely to be older, without formal education and not currently working. Being an inpatient at the facility and being diagnosed with cervical cancer or leukaemia was a predictor of poor health-related quality of life. CONCLUSION: Improvement of cancer care in East Africa requires a comprehensive and integrated approach that addresses various challenges specific to the region. Such strategies include investment in healthcare infrastructure, for example, clinical guidelines to improve pain management, and patient education and support services.


Main findings: The majority of adult patients attending specialized cancer care in Uganda report impaired physical and emotional functioning, and pain, at levels that merit clinical concern.Added knowledge: The large proportion of in- and outpatients with poor self-reported health-related quality of life indicates supportive care needs, exceeding corresponding figures from high-income settings.Global health impact for policy and action: Improvement of cancer care in East Africa requires a comprehensive approach that should include investment in healthcare infrastructure, e.g. clinical guidelines to improve pain management, and patient education and support services.


Assuntos
Qualidade de Vida , Neoplasias do Colo do Útero , Adulto , Feminino , Humanos , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Estudos Transversais , Uganda/epidemiologia , Dor/epidemiologia , Dor/psicologia , Inquéritos e Questionários , Fadiga/epidemiologia , Fadiga/etiologia , Fadiga/psicologia
9.
Support Care Cancer ; 32(5): 298, 2024 Apr 19.
Artigo em Inglês | MEDLINE | ID: mdl-38639810

RESUMO

PURPOSE: Colorectal cancer (CRC) incidence and mortality are increasing among young adults (YAs) aged 18-39. This study compared quality of life (QOL) between YA and older adult CRC survivors in the ColoCare Study. METHODS: Participants were grouped by age (years) as follows: 18-39 (YA), 40-49, 50-64, and 65 + . Functional QOL (physical, social, role, emotional, cognitive) and global QOL were assessed with the EORTC-QLQ-C30 at enrollment, 3, 6, and 12 months. Average scores were compared between groups over time using longitudinal mixed-effect modeling. Proportions with clinically meaningful QOL impairment were calculated using age-relevant thresholds and compared between groups over time using logistic regression with mixed effects. RESULTS: Participants (N = 1590) were n = 81 YAs, n = 196 aged 40-49, n = 627 aged 50-64, and n = 686 aged 65 + . Average physical function was better among YAs than participants aged 50-64 (p = 0.010) and 65 + (p < 0.001), and average social function was worse among YAs than aged 65 + (p = 0.046). Relative to YAs, all age groups were less likely to report clinically meaningful social dysfunction (aged 40-49 OR = 0.13, 95%CI = 0.06-0.29; aged 50-64 OR = 0.10, 95%CI = 0.05-0.21; aged 65 + OR = 0.07, 95%CI = 0.04-0.15) and role dysfunction (aged 40-49 OR = 0.36, 95%CI = 0.18-0.75; aged 50-64 OR = 0.41, 95%CI = 0.22-0.78; aged 65 + OR = 0.32, 95%CI = 0.17-0.61). Participants aged 40-49 were also less likely to report physical dysfunction (OR = 0.42, 95%CI = 0.19-0.93). CONCLUSION: YA CRC survivors reported better physical and worse social function compared to older CRC survivors, and YA CRC survivors were more likely to report clinically meaningful social, role, and physical disfunction. Future work should further investigate QOL using age-relevant benchmarks to inform best practices for CRC survivorship care. TRIAL REGISTRATION: NCT02328677, registered December 2014.


Assuntos
Sobreviventes de Câncer , Neoplasias Colorretais , Idoso , Humanos , Adulto Jovem , Sobreviventes de Câncer/psicologia , Neoplasias Colorretais/terapia , Neoplasias Colorretais/psicologia , Emoções , Qualidade de Vida/psicologia , Sobreviventes/psicologia , Adolescente , Adulto , Pessoa de Meia-Idade
10.
Med Sci Monit ; 30: e943594, 2024 Apr 11.
Artigo em Inglês | MEDLINE | ID: mdl-38600677

RESUMO

BACKGROUND The endocrine metabolic disorder polycystic ovary syndrome (PCOS) is quite common among women. Women with PCOS show a compromised health-related quality of life (HRQoL), impaired emotional well-being, and alexithymia, a neuropsychological phenomenon conceptualized as difficulty in recognizing and expressing one's emotions. However, the relationship between alexithymia and HRQoL in women with PCOS is unclear. This study aimed to investigate the impact of alexithymia on HRQoL in women with PCOS in Saudi Arabia. MATERIAL AND METHODS This descriptive cross-sectional, community-based study enrolled 518 female patients with a diagnosis of PCOS from all age groups. The patients were surveyed via a self-administered questionnaire from December 2022 to January 2023. The survey encompassed sociodemographic data, the 20-item Toronto Alexithymia Scale (TAS-20), and HRQoL 15-dimensional scale (15D). RESULTS This study included 320 participants (61.8%) with alexithymia. A significant association was found between alexithymia and low HRQoL 15D scores in patients with PCOS. Specifically, scores on the TAS-20 subscales related to difficulty in identifying feelings and describing feelings were positively correlated with HRQoL (P=0.000). However, externally oriented thinking subscale scores were not positively correlated with HRQoL (P=0.44). CONCLUSIONS The presence of alexithymia is associated with poor HRQoL in women with PCOS, which is more pronounced among those who received a diagnosis ≥4 years ago. Alexithymia must be considered when assessing the HRQoL of patients with PCOS, considering the relatively high prevalence of alexithymia in these patients.


Assuntos
Síndrome do Ovário Policístico , Qualidade de Vida , Humanos , Feminino , Qualidade de Vida/psicologia , Sintomas Afetivos/diagnóstico , Sintomas Afetivos/epidemiologia , Sintomas Afetivos/psicologia , Síndrome do Ovário Policístico/complicações , Estudos Transversais , Arábia Saudita
11.
Rehabilitation (Stuttg) ; 63(2): 119-130, 2024 Apr.
Artigo em Alemão | MEDLINE | ID: mdl-38626791

RESUMO

As a result of increasingly individualized and multimodal therapy, prognosis of breast cancer has improved significantly over the last years. However, multimodal treatment and the use of new medications can lead to a variety of somatic, sometimes new, side effects such as fatigue, polyneuropathy or autoimmune toxicities. This and the oncological diagnosis lead to a high level of psychological distress in the women affected and often to subsequent psychological disorders (sleep/anxiety disorders, depression, ...). Both the diverse complaints after oncological therapy and the increasingly improved overall prognosis underline the importance of multimodal rehabilitation concepts to improve quality of life and successful professional reintegration.In the following, these secondary disorders after breast cancer, their multimodal therapy and their significance for social-medical performance assessment are presented in more detail.


Assuntos
Neoplasias da Mama , Feminino , Humanos , Neoplasias da Mama/psicologia , Depressão , Qualidade de Vida/psicologia , Alemanha , Ansiedade/psicologia , Ansiedade/terapia , Fadiga/complicações
12.
Glob Heart ; 19(1): 36, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38638125

RESUMO

Background: Health-related quality of life (HRQOL) is a critical issue for patients undergoing surgery for congenital heart disease (CHD) but has never been assessed in a low-income country. We conducted a cross-sectional mixed methods study with age-matched healthy siblings serving as controls at the Uganda Heart Institute. Methods: One-hundred fifteen CHD pediatric and young adult patients and sibling control participants were recruited. Health-related quality of life was assessed using the Pediatric Quality of Life Inventory Version 4.0 in participants ages 5-17 and 36-Item Short Form Survey for young adults aged 18-25. A subset of 27 participants completed face-to-face interviews to supplement quantitative findings. Results: Eighty-six pediatric (age 5-17) sibling and parent pairs completed Peds QOL surveys, and 29 young adult (age 18-25) sibling pairs completed SF-36 surveys. One third of patients had surgery in Uganda. Ventricular septal defects and tetralogy of Fallot were the most common diagnoses. Health-related quality of life scores in patients were lower across all domains compared to control participants in children. Reductions in physical and emotional domains of HRQOL were also statistically significant for young adults. Variables associated with lower HRQOL score on multivariate analysis in pediatric patients were younger age in the physical and emotional domains, greater number of surgeries in the physical domain and surgery outside Uganda in the school domain. The only predictor of lower HRQOL score in young adults was surgery outside Uganda in the social domain. Qualitative interviews identified a number of themes that correlated with survey results including abandonment by family, isolation from peers and community, financial hardship and social stigmatization. Conclusion: Health-related quality of life was lower in Ugandan patients after CHD surgery than siblings. Younger patients and those who had surgery outside of Uganda had lower HRQOL. These data have important implications for patients undergoing CHD surgery in LMIC and have potential to inform interventions.


Assuntos
Cardiopatias Congênitas , Qualidade de Vida , Humanos , Criança , Adulto Jovem , Adolescente , Adulto , Pré-Escolar , Qualidade de Vida/psicologia , Uganda/epidemiologia , Estudos Transversais , Cardiopatias Congênitas/cirurgia , Nível de Saúde , Inquéritos e Questionários
13.
Integr Cancer Ther ; 23: 15347354241237972, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38654515

RESUMO

BACKGROUND: Breast cancer survivors often suffer from diagnosis- and therapy-related long-term side effects, such as cancer related fatigue, restricted stress resilience and quality of life. Walking as a physical activity and mindfulness practice have been shown to be helpful in studies. The aim of this study was to compare the individual experiences and subjectively perceived effects of walking in combination with mindfulness practice with moderate walking alone in breast cancer patients. This paper focuses on the qualitative results of a mixed-methods pilot study. METHODS: Breast cancer patients who had finished their primary oncologic treatment at least 6 months ago were randomized to an 8-week group intervention program of either mindful walking or moderate walking. Within the qualitative study part, semi-structured focus group interviews (2 interviews per study arm) were conducted and analyzed using a qualitative content analysis approach. Audio recorded interviews were transcribed verbatim and pseudonymized. The subsequent data analysis was performed by using MAXQDA®. RESULTS: A total of 51 women (mean age 55.8 [SD 10.9] years) were included in the RCT, among these 20 (mean age 56.7 [SD 12.0] years) participated in the focus group interviews (n = 11 patients of the mindful walking group; n = 9 patients of the walking group). Breast cancer patients in both groups described different effects in the complex areas of self-efficacy, coping, body awareness and self-reflection. While mindful walking primarily promoted body awareness and inner strength by mindfulness in breast cancer patients, moderate walking promoted self-efficacy by a confidence of their body and an easily integrated and accepted way of physical activity. CONCLUSIONS: Study interventions and the study setting triggered processes and reflections on one's own health and situation. However, mindful walking and moderate walking seem to address different resources. This important knowledge may help oncologists and other therapists to assess what type of interventions can best meet the needs and requirements of individual patients. TRIAL REGISTRATION: DKRS00011521; prospectively registered 21.12.2016; https://drks.de/search/de/trial/DRKS00011521.


Assuntos
Neoplasias da Mama , Atenção Plena , Pesquisa Qualitativa , Qualidade de Vida , Caminhada , Humanos , Feminino , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Atenção Plena/métodos , Pessoa de Meia-Idade , Caminhada/fisiologia , Caminhada/psicologia , Qualidade de Vida/psicologia , Grupos Focais , Projetos Piloto , Sobreviventes de Câncer/psicologia , Idoso , Adulto , Fadiga/terapia , Fadiga/psicologia
14.
Health Qual Life Outcomes ; 22(1): 36, 2024 Apr 23.
Artigo em Inglês | MEDLINE | ID: mdl-38649987

RESUMO

CONTEXT: In France, 2300 adolescents and young adults (AYAs, 15-25 years old) are diagnosed with cancer each year. As soon as the disease is diagnosed, a number of physical, psychological and social needs may arise. The aim of this study is to develop a tool to measure unmet needs that will allow the specificities of AYAs to be understood while allowing health care staff to mobilise the necessary actors to resolve them. METHODS: We developed the Questionnaire nEEd Cancer AYAs (QUEEC-AYAs questionnaire), from two existing questionnaires: the Cancer Needs Questionnaire Young People and the Needs Assessment & Service Bridge. A main sample of 103 AYAs then received and completed the questionnaire in order to conduct an exploratory factor analysis. RESULTS: The final structure of the QUEEC-AYAs is composed of 7 dimensions and 48 items: information (8 items), cancer care team (6 items), Physical health (4 items), Emotional health (14 items), Sexual & reproductive health (6 items), Health behaviors & wellness (4 items), Daily life (6 items). The questionnaire has a good acceptability and all domains have a Cronbach's alphas value above 0.80. CONCLUSION: The QUEEC-AYAs is the first measure of the psychosocial needs of AYAs available in French. Its systematic use in health care services should improve the coordination of care required by AYAs during and after treatment. TRIAL REGISTRATION: This study was approved by the ethics committee of the Paoli-Calmettes Institute (IRB # IPC 2021-041, 2021 May 20).


Assuntos
Determinação de Necessidades de Cuidados de Saúde , Neoplasias , Humanos , Inquéritos e Questionários , Adolescente , Neoplasias/psicologia , Neoplasias/terapia , Adulto Jovem , Feminino , Masculino , França , Adulto , Psicometria , Reprodutibilidade dos Testes , Necessidades e Demandas de Serviços de Saúde , Qualidade de Vida/psicologia
15.
Int J Community Based Nurs Midwifery ; 12(2): 98-108, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38650955

RESUMO

Background: Having a parent with cancer is one of the risk factors for adolescents, which makes them face many psychological problems. Therefore, this study aimed to determine the effect of Happiness Educational Program of Fordyce on the sense of coherence and psychological well-being of adolescents who have a parent with cancer. Methods: In this randomized clinical trial study, 92 adolescents whose diagnosed parents have referred to the oncology ward of Shahid Rajaei Hospital in Yasuj, from June to September 2021, were selected through the convenience sampling method; however, they were randomly assigned to one of the two groups of the intervention or control. The number of sessions in the intervention group was 6, each consisting of 60 minutes and performed one day a week for 6 weeks. In addition to the demographic information form, the Antonovsky's Sense of Coherence Questionnaire-13 and the Ryff's scale of Psychological Well-being-18 were used before and immediately after the intervention. Data were analyzed through SPSS software, version 21, using statistical tests of Chi-square, t-test, Fisher's exact, Mann-Whitney, and Wilcoxon. Results: After the intervention, statistically significant differences were observed in the median scores of the sense of coherence (P<0.001) and psychological well-being (P<0.001) between the two groups of intervention and control. Conclusion: Although the Happiness Educational Program of Fordyce could improve the sense of coherence and psychological well-being of adolescents who have a parent with cancer, more investigations are recommended to be conducted.Trial Registration Number: IRCT20210331050795N1.


Assuntos
Felicidade , Neoplasias , Senso de Coerência , Humanos , Adolescente , Feminino , Masculino , Neoplasias/psicologia , Inquéritos e Questionários , Pais/psicologia , Pais/educação , Irã (Geográfico) , Adaptação Psicológica , Qualidade de Vida/psicologia , Bem-Estar Psicológico
16.
Psychooncology ; 33(4): e6339, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38653573

RESUMO

BACKGROUND: Fear of progression (FOP) is a common and significant concern among cancer patients, encompassing worries about cancer progression during active treatment. Elevated levels of FOP can be dysfunctional. This study aims to assess the efficacy of an Acceptance and Commitment Therapy (ACT)-based intervention on FOP, anxiety sensitivity (AS), and quality of life (QOL) in breast cancer patients. METHODS: A clinical trial was conducted involving 80 stage I-III active-treatment breast cancer patients with a score greater than 34 on the Fear of Progression Questionnaire-Short Form scale. These patients were randomly assigned in a 1:1 ratio to either an intervention group, which received weekly 70-min sessions of 5-ACT-bsed group-therapy, or a control group that received usual treatment. Variables including FOP, AS, QOL, and ACT-related factors were assessed using ASQ, QLQ-C30, Cognitive Fusion Questionnaire, and Acceptance and Action Questionnaire-II at three time points: baseline, post-intervention, and 3-month follow-up. The efficacy of the intervention was evaluated using mixed model analysis across all time-points. RESULTS: The fidelity and acceptability of the ACT-based manual were confirmed using significant methods. A significant reduction in FOP was observed only in the ACT group at post-intervention (P-valueACT < 0.001; Cohen dACT = 1.099). Furthermore, the ACT group demonstrated a more significant reduction in FOP at follow-up. Furthermore, all secondary and ACT-related variables, except for the physical symptoms subscale, showed significant improvement in the ACT group compared to the control group. CONCLUSIONS: Our ACT-based manual showed promise for reducing FOP, AS, and improving QOL, and ACT-related variables in breast cancer patients 3 months following the intervention.


Assuntos
Terapia de Aceitação e Compromisso , Ansiedade , Neoplasias da Mama , Progressão da Doença , Medo , Psicoterapia de Grupo , Qualidade de Vida , Humanos , Feminino , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Terapia de Aceitação e Compromisso/métodos , Qualidade de Vida/psicologia , Pessoa de Meia-Idade , Medo/psicologia , Ansiedade/terapia , Ansiedade/psicologia , Psicoterapia de Grupo/métodos , Adulto , Inquéritos e Questionários , Idoso , Resultado do Tratamento
17.
Zhonghua Xue Ye Xue Za Zhi ; 45(1): 54-61, 2024 Jan 14.
Artigo em Chinês | MEDLINE | ID: mdl-38527839

RESUMO

Objective: To evaluate the status of, differences in, and factors influencing quality of life (QoL) in patients with chronic graft-versus-host disease (GVHD). Methods: From September 2021 to February 2023, a cross-sectional study of 140 patients with chronic GVHD was conducted at our center. Symptom burden was assessed by the Lee Symptomatology Scale (LSS), and QoL was assessed by the Medical Outcome Study 36-Item Short-Form Health Survey (SF-36) (version 1) and five-level EuroQoL five-dimensional questionnaire (EQ-5D-5L). Results: Data from 140 respondents, including 32 (22.9%) with mild chronic GVHD, 87 (62.1%) with moderate chronic GVHD, and 21 (15.0%) with severe chronic GVHD, were analyzed. Of the respondents, 61.4% were male, and the median transplantation age was 34 (15-68) years. The primary diagnoses were acute myeloid leukemia (50.0%), acute lymphoblastic leukemia (20.0%), and myelodysplastic syndrome (15.0%). The common chronic GVHD-affected organs included the skin in 74 patients (52.9%), the eyes in 57 patients (40.7%), and the liver in 50 patients (35.7%). Among the whole cohort, the eye (20.48±23.75), psychological (16.13±17.00), and oral (13.66±20.55) scores were highest in the LSS group. The physiological function (36.07±11.13), social function (36.10±10.68), and role-emotional functioning (38.36±11.88) scores were lowest in the SF-36 group. The EQ-5D index was 0.764. The total LSS scores for mild, moderate, and severe chronic GVHD were 6.51±6.15, 10.07±5.61, and 20.90±10.09, respectively. The SF-36 physical component scores (PCSs) were 43.12±6.38, 40.73±7.14, and 36.97±6.97, respectively, and the mental component scores (MCSs) were 43.00±8.47, 38.90±9.52, and 28.96±9.63, respectively. The EQ-5D values were 0.810±0.124, 0.762±0.179, and 0.702±0.198, respectively. The multivariate analysis showed that the overall symptom burden (ß=-0.517), oral symptom burden (ß=-0.456), National Institute of Health (NIH) criteria for the eyes (ß=-0.376), and nutrition-related symptom burden (ß=-0.211) were significantly negatively correlated with the PCS. The NIH score (ß=-0.260) was negatively correlated with the MCS score. Oral symptom burden (ß=-0.400), joint/fascia NIH criteria (ß=-0.332), number of involved systems (ß=-0.253), overall NIH criteria (ß=-0.205), and number of immunosuppressants taken (ß=-0.171) were significantly negatively correlated with the EQ-5D score (all P<0.05). Medium to strong correlations were found between the EQ-5D score and the SF-36 score (|r|=0.384-0.571, P<0.001). Conclusions: The QoL of patients with chronic GVHD is impaired, and the more severe the disease, the poorer the QoL. Overall symptom burden, severity of eyes, and oral symptom burden were the most important factors affecting QoL.


Assuntos
Síndrome de Bronquiolite Obliterante , Qualidade de Vida , Humanos , Masculino , Adulto , Pessoa de Meia-Idade , Idoso , Feminino , Qualidade de Vida/psicologia , Estudos Transversais , Inquéritos e Questionários , 60459 , Doença Crônica
18.
Einstein (Sao Paulo) ; 22: eAO0585, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38536971

RESUMO

OBJECTIVE: Patients with cancer often undergo multiple extended treatments that decrease their quality of life. However, the quality of life of women with breast cancer after they undergo treatment remains underexplored in Brazil. Therefore, this study determined sociodemographic, behavioral, and clinical factors related to the post-treatment quality of life of women with breast cancer. METHODS: This cross-sectional study involved 101 women diagnosed with breast cancer between 2014 and 2016 and treated at a Brazilian Oncology Reference Service. Data were collected from them using face-to-face surveys. Quality of life was evaluated using the European Organization for the Research and Treatment of Cancer Core Quality of Life questionnaire (EORTC QLQ-C30) and EORTC Breast Cancer-specific Quality of Life questionnaire (EORTC QLQ-BR23). The data collected were analyzed using Student's t-test and Mann-Whitney U test. RESULTS: The median score on the global health, functional, and symptom scales of the EORTC QLQ-C30 was 75.00 (Interquartile range=33.33), 75.99 (Standard deviation [SD]=19.26), and 19.67 (SD=16.91), respectively. The mean score on the functional and symptom scales of the EORTC QLQ-BR23 was 61.89 (SD=17.21) and 20.12 (SD=16.94), respectively. Furthermore, higher post-treatment quality of life was found to be associated with being aged 50 or more, being Black, having eight or more years of education, having a partner, having a paying job, receiving treatment from the private healthcare system, having a higher income, living in the municipality where healthcare services are availed, engaging in physical activity, not smoking, being more religious, having more social support, not being overweight, having no comorbidities, and undergoing lumpectomy. CONCLUSION: Sociodemographic, behavioral, and clinical factors significantly impact the quality of life of women who undergo breast cancer treatment. Implementing interventions that improve health and reducing inequalities in the access to healthcare services can improve the quality of life of these patients. BACKGROUND: Sociodemographic, clinical, and lifestyle factors impact the quality of life of breast cancer survivors. BACKGROUND: Breast cancer therapy may affect future perspectives and emotional, cognitive, and sexual function. BACKGROUND: Some aspects of quality of life still require attention from health professionals. BACKGROUND: Higher post-treatment quality of life of women with breast cancer is linked to being aged 50 or more, being Black, having 8 or more years of education, having a partner, having a paying job, receiving care from private healthcare, having a high per capita income, residing in the municipality where the service is availed, engaging in physical activity, not smoking, greater religiosity, having more social support, having a normal weight, having no comorbidities, and undergoing lumpectomy.


Assuntos
Neoplasias da Mama , Qualidade de Vida , Humanos , Feminino , Qualidade de Vida/psicologia , Neoplasias da Mama/tratamento farmacológico , Estudos Transversais , Inquéritos e Questionários , Sobreviventes
19.
J Cardiothorac Surg ; 19(1): 125, 2024 Mar 13.
Artigo em Inglês | MEDLINE | ID: mdl-38481263

RESUMO

BACKGROUND: Coronary artery disease (CAD) patients who have undergone coronary artery bypass grafting (CABG) often experience a severe psychological burden for a long period of time, which can adversely affect their post-operative prognosis. Therefore, this study aimed to evaluate the effect of a web-based Information-Knowledge-Attitude-Practice (WIKAP) continuous intervention on the psychological status, medical compliance, and quality of life (QoL) in patients with CAD after CABG surgery. METHODS: A parallel randomized clinical trial enrolled 174 CAD patients who underwent CABG at our hospital between January 2018 and December 2019. The participants were randomly divided into the Control and WIKAP group and received intervention for 12 months. The scores for anxiety, depression, medical compliance, and QoL were assessed on the first day (M0), 3rd month (M3), 6th month (M6), 9th month (M9) and 12th month (M12) after discharge. Furthermore, the occurrence of major adverse cardiac and cerebrovascular events (MACCE) was analyzed using the Kaplan-Meier curve and Cox proportional regression models for an additional 24-month follow-up period without any intervention. RESULTS: After the 12-month intervention, the scores of anxiety and depression were significantly reduced in the WIKAP group at M9 and M12 compared to those in the Control group (all P < 0.05). Additionally, the scores of medical compliance in the WIKAP group were remarkably elevated at M6, M9, and M12 compared with those scores in the Control group (all P < 0.05). Furthermore, the QoL scores were lower in the WIKAP group at M6, M9, and M12 compared to the Control group (all P < 0.05). However, the MACCE-free survival showed no significant difference between the two groups (P > 0.05). Cox proportional regression analysis also showed that the nursing intervention (Control vs. WKIAP) was not associated with the incidence of MACCE. CONCLUSION: WIKAP nursing intervention effectively improved the psychological health, medical compliance, and QoL in CAD patients who underwent CABG operation, but it did not prolong MACCE-free survival. TRAIL REGISTRATION: The study is registered in isrctn.org: ISRCTN13653455.


Assuntos
Doença da Artéria Coronariana , Intervenção Coronária Percutânea , Humanos , Qualidade de Vida/psicologia , Ponte de Artéria Coronária/efeitos adversos , Internet , Resultado do Tratamento
20.
Artigo em Inglês | MEDLINE | ID: mdl-38541305

RESUMO

Bone dysplasia (BD) refers to a group of rare disorders characterized by skeletal and dental anomalies which may negatively influence oral health-related quality of life (OHRQoL). The aim of this cross-sectional study was to assess the impact of BD on OHRQoL in Italian children and adolescents and to assess whether gender and age influence their OHRQoL. A total of 40 patients with BD and 40 age- and gender-matched controls (aged 8-14 years) were asked to complete the Oral Health Impact Profile-14 (OHIP-14), Child Oral Health Impact Profile (COHIP), and the short form of the Child Perceptions Questionnaire (SF-CPQ). Children with BD showed statistically significant lower overall scores of all the questionnaires than the controls (all p < 0.001), with the largest differences being detected in overall symptoms, functional well-being, and social well-being domains. While no statistically significant gender-related differences were observed, adolescents aged 11-14 years experienced worse perception in the emotional and social well-being SSF-CPQ domains (p = 0.042 and p = 0.045, respectively) and in the peer interaction COHIP domain (p = 0.011) compared to the younger age group. Based on these findings, children suffering from BD experience poorer OHRQoL than their healthy peers, suggesting that oral and dental issues may be of special importance for the socio-psychological well-being of these growing individuals.


Assuntos
Saúde Bucal , Qualidade de Vida , Criança , Humanos , Adolescente , Qualidade de Vida/psicologia , Estudos Transversais , Nível de Saúde , Inquéritos e Questionários , Itália
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