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1.
Rev Bras Enferm ; 77(1): e20230100, 2024.
Artigo em Inglês, Espanhol | MEDLINE | ID: mdl-38716906

RESUMO

OBJECTIVES: To evaluate the internal consistency and construct validity of the QLQ-MY20 for assessing the quality of life in multiple myeloma survivors in Chile. METHODS: This was a cross-sectional study conducted between March 2020 and December 2022. It involved 118 individuals from two public hospitals. The QLQ-C30 and QLQ-MY20 questionnaires were used. Internal consistency was assessed using Cronbach's alpha(α), and construct validity was evaluated through hypothesis testing (Mann-Whitney and Spearman correlation). RESULTS: The average age of participants was 67.2 years (SD=9.2). Internal consistency for the complete scale was α=0.779, for the "disease symptoms" dimension α=0.671, for the "side effects of treatments" dimension α=0.538, and for the "future perspective" dimension α=0.670. Four of the five construct validity hypotheses were confirmed: women, individuals with worse performance status, those with pain, and those with worse fatigue showed more symptoms. CONCLUSIONS: The Chilean version of the QLQ-MY20 demonstrates adequate internal consistency and construct validity.


Assuntos
Mieloma Múltiplo , Psicometria , Qualidade de Vida , Humanos , Mieloma Múltiplo/psicologia , Mieloma Múltiplo/complicações , Qualidade de Vida/psicologia , Feminino , Masculino , Estudos Transversais , Psicometria/instrumentação , Psicometria/métodos , Psicometria/normas , Chile , Inquéritos e Questionários , Idoso , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Idoso de 80 Anos ou mais
2.
Rev Bras Enferm ; 77(1): e20230358, 2024.
Artigo em Inglês, Português | MEDLINE | ID: mdl-38716910

RESUMO

OBJECTIVES: to psychometrically validate the European Organization for Research and Treatment of Cancer Core Quality of Life Questionnaire EORTC QLQ-INFO25 instrument and identify the domains that influence patients' perception of the information received. METHODS: a cross-sectional methodology with cancer patients in a Brazilian philanthropic hospital institution. Sociodemographic and clinical instruments, EORTC QLQ-C30, EORTC QLQ-INFO25 and Supportive Care Needs Survey - Short Form 34 were used. Analysis occurred using Cronbach's alpha coefficients, intraclass correlation, test-retest and exploratory factor analysis. RESULTS: 128 respondents participated. Cronbach's alpha coefficient was 0.85. The test-retest obtained p-value=0.21. In the factor analysis, one item was excluded. Satisfaction with the information received was 74%, with three areas with averages below 70%. In open-ended questions, there was a greater desire for information. CONCLUSIONS: validity evidence was obtained with instrument reliability, consistency and stability. Respondents expressed satisfaction with the information received.


Assuntos
Neoplasias , Satisfação do Paciente , Psicometria , Humanos , Masculino , Feminino , Estudos Transversais , Psicometria/instrumentação , Psicometria/métodos , Psicometria/normas , Inquéritos e Questionários , Pessoa de Meia-Idade , Satisfação do Paciente/estatística & dados numéricos , Reprodutibilidade dos Testes , Neoplasias/psicologia , Brasil , Adulto , Idoso , Qualidade de Vida/psicologia
3.
Psychooncology ; 33(5): e6342, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38747633

RESUMO

OBJECTIVE: A mixed-methods systematic review to determine reported symptoms, concerns, and experiences of women living with and beyond breast cancer in Africa. METHODS: Literature searches were conducted in Medline, Embase, PsycINFO, Global Health, Web of Science, CINAHL, and the Cochrane Library. Quantitative and qualitative studies that comprised study populations of women with breast cancer from countries in Africa, detailing symptoms, concerns, and experiences of living with and beyond breast cancer were included. Inductive framework analysis was applied to organise existing literature with the Adversity, Restoration, and Compatibility framework and quality was assessed using the Mixed Methods Appraisal Tool. RESULTS: In total, 48 studies were included, comprising quantitative (n = 24), qualitative (n = 23) and mixed method (n = 1) studies. Women reported multiple complex and burdensome symptoms at all stages of the breast cancer disease trajectory. Multiple pervasive factors influencing participants' experiences included a lack of cancer knowledge, being removed from decision-making, religion, and the presence and use of traditional medicines. Literature relating to benefit finding, understanding identity for the future, and broader perspectives of well-being was absent. CONCLUSIONS: This review contributes insights and mapping of symptoms, concerns, and experiences of women with breast cancer in Africa. There is a great necessity to increase an understanding of the needs and experiences of women with breast cancer in Africa following cancer treatment, stages of remission, and longer-term monitoring and follow-up. This is required to ensure access to prompt and timely clinical and individualized supportive care for women with breast cancer in Africa.


Assuntos
Neoplasias da Mama , Humanos , Neoplasias da Mama/psicologia , Neoplasias da Mama/terapia , Feminino , África , Sobreviventes de Câncer/psicologia , Pesquisa Qualitativa , Qualidade de Vida/psicologia , Conhecimentos, Atitudes e Prática em Saúde
4.
BMC Womens Health ; 24(1): 277, 2024 May 07.
Artigo em Inglês | MEDLINE | ID: mdl-38714996

RESUMO

BACKGROUND: Quality of life research can guide clinical workers to adopt more targeted treatment and intervention measures, so as to achieve the purpose of improving patients' quality of life. The objective of this study was to evaluate health-related quality of life in Chinese patients with cervical cancer and to explore its influencing factors. METHODS: A total of 186 patients with cervical cancer were investigated by using the QLICP-CE (V2.0) scale (Quality of Life Instruments for Cancer Patients-Cervical Cancer) developed by our group in China. The data were analyzed by t-test, one-way ANOVA, univariate analysis, and multivariate linear regression. RESULTS: The total score of quality of life scale for cervical cancer patients was (62.58 ± 12.69), Univariate analysis of objective clinical indexes showed that creatinine concentration was a negative influence factor in the psychological domain, potassium ion concentration was a negative influence factor in the common symptoms and side effect domain, erythrocyte content was a positive influence factor physical domain and common general domain. Multiple linear regression results suggested that clinical staging was the influencing factor of common symptom and side effect domain, common general module and total score of scale. Marital status has different degrees of influence on the psychological, social, and common general domains. The level of education also influenced scores in the social domain. CONCLUSION: The total score of quality of life in patients with cervical cancer who received active treatment was acceptable. Marital status, clinical staging, and educational level are the factors that affect the quality of life of patients with cervical cancer. At the same time, potassium ion concentration, red blood cell count and creatinine concentration also have important effects on quality of life in patients with cervical cancer. Therefore, it is very important to give personalized treatment and nursing to patients based on various factors.


Assuntos
Qualidade de Vida , Neoplasias do Colo do Útero , Humanos , Feminino , Neoplasias do Colo do Útero/psicologia , Qualidade de Vida/psicologia , Pessoa de Meia-Idade , Adulto , China/epidemiologia , Inquéritos e Questionários , Idoso , Estadiamento de Neoplasias , Creatinina/sangue , Estado Civil , Modelos Lineares
5.
Int J Equity Health ; 23(1): 92, 2024 May 07.
Artigo em Inglês | MEDLINE | ID: mdl-38715047

RESUMO

BACKGROUND: Family caregivers are vital for long-term care for persons with serious health-related suffering in Kerala. Long-term caregiving and ageing may become burdensome and detrimental to patients and caregivers. We compared the caregiver burden and quality-of-life of ageing caregivers with younger caregivers. We also explored the palliative care nurses' perceptions of the family caregivers' issues. METHODS: We did a mixed method study focusing on two groups: (i) three in-depth interviews and a cross-sectional survey among 221 caregivers of palliative care patients in five randomly selected panchayats (most peripheral tier of three-tier local self-government system in India concerned with governance of a village or small town) of Kollam district, Kerala, as part of development and validation of the Achutha Menon Centre Caregiver Burden Inventory; (ii) five in-depth interviews with purposively selected primary palliative care nurses as part of a study on local governments and palliative care. We used a structured interview schedule to collect cross-sectional data on sociodemographic and caregiving-related characteristics, caregiver burden, and health-related quality of life using the EuroQol EQ5D5L and interview guidelines on caregiver issues tailored based on participant type for qualitative interviews. RESULTS: Older caregivers comprised 28.1% of the sample and had significantly poorer health and quality-of-life attributes. More senior caregivers experiencing caregiver burden had the lowest mean scores of 0.877 (Standard deviation (SD 0.066, 95% confidence intervals (CI) 0.854-0.899) followed by younger caregivers with high burden (0.926, SD 0.090, 95% CI 0.907-0.945), older caregivers with low burden (0.935, SD 0.058, 95% CI 0.912-0.958) and younger caregivers with low burden (0.980, SD 0.041, 95% CI 0.970-0.990). Caregivers faced physical, psychological, social, and financial issues, leading to a caregiver burden. The relationships between the palliative care nurses and family caregivers were complex, and nurses perceived caregiver burden, but there were no specific interventions to address this. CONCLUSION: In our study from Kollam, Kerala, three out of ten caregivers of palliative care patients were 60 years of age or older. They had significantly lower health-related quality of life, particularly if they perceived caregiver burden. Despite being recognized by palliative care nurses, caregiver issues were not systematically addressed. Further research and suitable interventions must be developed to target such problems in the palliative care programme in Kerala.


Assuntos
Sobrecarga do Cuidador , Cuidadores , Cuidados Paliativos , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Feminino , Masculino , Estudos Transversais , Índia , Pessoa de Meia-Idade , Adulto , Cuidadores/psicologia , Sobrecarga do Cuidador/psicologia , Idoso , Inquéritos e Questionários
6.
JAMA Netw Open ; 7(5): e2410145, 2024 May 01.
Artigo em Inglês | MEDLINE | ID: mdl-38713463

RESUMO

Importance: Symptom burden and its characteristics among survivors of pediatric cancers aged 8 to 18 years remain understudied. Objective: To examine the prevalence of symptom burden among young childhood cancer survivors and identify associations with sociodemographic, clinical, and psychological resilience skills, and health-related quality of life (HRQOL). Design, Setting, and Participants: A cross-sectional analysis using data collected from November 1, 2017, to January 31, 2019, in a survivorship clinic at a US-based comprehensive cancer center was conducted. Participants included 302 dyads of children aged 8 to 18 years who survived at least 5 years beyond diagnosis and their primary caregivers. Data analysis was performed from March 13, 2023, to February 29, 2024. Exposures: Diagnosis, caregiver-reported family conflict, self-reported caregiver anxiety, neighborhood-level social vulnerability, and survivor-reported meaning and purpose. Main Outcomes and Measures: Novel symptom-level burden, integrating the attributes of severity and daily activity interference using the pediatric version of the Patient-Reported Outcomes Version of the Common Terminology Criteria for Adverse Events, global cumulative symptom burden, and HRQOL using the EuroQol-5D. Multinomial logistic regression identified characteristics associated with symptom burden; linear regression assessed symptom burden and HRQOL associations. Results: Among 302 survivors (mean [SD] age, 14.2 [2.9] years, mean [SD] time since diagnosis, 10.9 [2.9] years; 153 [50.7%] male), 186 (62.0%) had low, 77 (25.7%) moderate, and 37 (12.3%) high global cumulative symptom burden. Greater caregiver anxiety was associated with moderate (risk ratio [RR], 1.56; 95% CI, 1.09-2.24) global symptom burden. Greater neighborhood deprivation was associated with moderate global symptom burden (RR, 4.86; 95% CI, 1.29-18.26). Survivors with greater meaning/purpose were less likely to have moderate (RR, 0.42; 95% CI, 0.29-0.61) and high (RR, 0.27; 95% CI, 0.16-0.46) global symptom burden. The burden of individual symptoms displayed similar patterns. Low (Cohen d, -0.60; 95% CI, -0.87 to -0.32) and moderate/high (d, -0.98; 95% CI, -1.53 to -0.43) general pain, moderate/high numbness (d, -0.99; 95% CI, -1.69 to -0.29), and moderate/high worry (d, -0.55; 95% CI, -0.99 to -0.11) were associated with lower HRQOL. Conclusions and Relevance: In this cross-sectional study of young childhood cancer survivors, symptom burden was prevalent. Caregiver anxiety and disparity-related neighborhood factors were associated with greater symptom burden, whereas meaning and purpose was a protective factor. Greater specific symptom burden contributed to poorer HRQOL. The findings suggest that interventions targeting resilience and neighborhood adversity may alleviate symptom burden and improve HRQOL.


Assuntos
Sobreviventes de Câncer , Neoplasias , Qualidade de Vida , Humanos , Masculino , Feminino , Criança , Adolescente , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Estudos Transversais , Qualidade de Vida/psicologia , Neoplasias/psicologia , Cuidadores/psicologia , Efeitos Psicossociais da Doença , Ansiedade/epidemiologia , Ansiedade/psicologia , Ansiedade/etiologia , Resiliência Psicológica , Carga de Sintomas
7.
Croat Med J ; 65(2): 101-110, 2024 Apr 30.
Artigo em Inglês | MEDLINE | ID: mdl-38706236

RESUMO

AIM: To explore the relationship between the current work ability index (WAI) and depressive and anxiety symptoms in breast cancer (BC) patients and the role of depressive, anxiety, and physical symptoms in mediating this relationship. METHODS: This prospective study enrolled 83 employed women with BC. At baseline assessment (in the first three months following BC diagnosis) and follow-up assessment (one year after baseline), participants completed the WAI, Beck Depression Inventory-II, State-Trait Anxiety Inventory, and European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire with a breast cancer-specific module. Mediation analyses were conducted to explore the mechanism by which depressive, anxiety, and physical symptoms influenced the relationship between WAI and depressive and anxiety symptoms. RESULTS: WAI was negatively associated with depressive and anxiety symptoms. The effect of baseline depressive and trait anxiety symptoms on WAI at follow-up was mediated by both depressive and trait anxiety symptoms, as well as by physical symptoms at follow-up. The effect of baseline state anxiety symptoms on WAI at follow-up was mediated only by state anxiety symptoms at follow-up. CONCLUSIONS: Baseline depressive and anxiety symptoms affect WAI at follow-up not only through persisting depressive and anxiety symptoms observed at follow-up but also through physical symptoms at follow-up. This indicates that efforts aimed at improving psychological health may result in simultaneous improvements in both psychological and physical health, as well as the resulting WAI.


Assuntos
Ansiedade , Neoplasias da Mama , Depressão , Qualidade de Vida , Humanos , Feminino , Neoplasias da Mama/psicologia , Estudos Prospectivos , Pessoa de Meia-Idade , Croácia/epidemiologia , Depressão/epidemiologia , Depressão/psicologia , Ansiedade/epidemiologia , Ansiedade/psicologia , Adulto , Qualidade de Vida/psicologia , Inquéritos e Questionários , Avaliação da Capacidade de Trabalho , Emprego , Escalas de Graduação Psiquiátrica , Idoso
8.
Holist Nurs Pract ; 38(3): 151-163, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38709131

RESUMO

Cancer is a global health concern and affects patient quality of life, anxiety, depression, and sleep. Physical exercise shows promise in alleviating these effects. Karate is a holistic intervention that could be used to improve several outcomes related to cancer disease, but to date its effect remains unexplored. This quasi-experimental pre-/poststudy evaluated the effects of a 6-month karate program conducted twice a week for 60 minutes each session on quality of life, anxiety, depression, sleep quality, and psychosomatic symptoms in 22 patients with posttherapy oncology. Significant improvements in quality of life (P = .006), anxiety (P < .001), depression (P < .001), and sleep quality (P = .011) were observed. Multidimensional psychophysical evaluation showed significant reductions in symptoms (P < .05). High participant satisfaction was reported across all dimensions. This pilot study shows the potential benefits in oncology patients, but more research is necessary to confirm these findings.


Assuntos
Neoplasias , Qualidade de Vida , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Neoplasias/psicologia , Neoplasias/complicações , Neoplasias/terapia , Adulto , Qualidade de Vida/psicologia , Idoso , Projetos Piloto , Ansiedade/psicologia , Ansiedade/terapia , Artes Marciais/psicologia , Artes Marciais/estatística & dados numéricos , Depressão/terapia , Depressão/psicologia
9.
Aust J Gen Pract ; 53(5): 305-310, 2024 05.
Artigo em Inglês | MEDLINE | ID: mdl-38697062

RESUMO

BACKGROUND: Oestrogen deprivation is the mainstay of treatment for women with hormone receptor-positive breast cancer, but unfortunately it causes multiple side effects that can significantly impair quality of life. Genitourinary symptoms are very common and although these symptoms can be effectively managed with vaginal oestrogens, concerns about their safety in women with breast cancer limits their use. OBJECTIVE: The aim of this review is to provide a summary of the data on the safety of vaginal oestrogens in women with breast cancer to help general practitioners advise their patients in this situation. DISCUSSION: Although there are no large randomised prospective studies to assess safety, the current evidence suggests reassurance can be provided to the majority of women with a history of breast cancer considering vaginal oestrogens. Consultation with the oncology team is advised for women taking aromatase inhibitors, where the safety of vaginal oestrogens is less certain.


Assuntos
Neoplasias da Mama , Estrogênios , Humanos , Feminino , Neoplasias da Mama/tratamento farmacológico , Neoplasias da Mama/complicações , Estrogênios/uso terapêutico , Estrogênios/efeitos adversos , Administração Intravaginal , Doenças Urogenitais Femininas/tratamento farmacológico , Doenças Urogenitais Femininas/fisiopatologia , Qualidade de Vida/psicologia
10.
Aust J Gen Pract ; 53(5): 253-257, 2024 05.
Artigo em Inglês | MEDLINE | ID: mdl-38697055

RESUMO

BACKGROUND: Prostate cancer is the second most common cancer among men globally. A range of management options are available for prostate cancer, including surgery, radiation therapy, hormone therapy, chemotherapy, or surveillance. Conservative strategies include active surveillance and watchful waiting, which differ in their intent. OBJECTIVE: We provide a targeted instructive management algorithm for improving understanding of conservative strategies in prostate cancer. DISCUSSION: Active surveillance involves close monitoring with curative intent when there is evidence of disease progression. In contrast, watchful waiting is palliative in intent and focuses on delaying treatment until symptoms or complications develop. Conservative approaches have demonstrated similar long-term oncological outcomes to radical treatment, while reducing harm from overtreatment, and maintaining quality of life by avoiding potential side effects such as urinary incontinence and erectile dysfunction. The decision to employ a conservative approach is determined by both patient and disease factors. Conservative management strategies play a vital role in the management of prostate cancer.


Assuntos
Neoplasias da Próstata , Conduta Expectante , Humanos , Masculino , Conduta Expectante/métodos , Neoplasias da Próstata/terapia , Progressão da Doença , Qualidade de Vida/psicologia
11.
Aust J Gen Pract ; 53(5): 333-336, 2024 05.
Artigo em Inglês | MEDLINE | ID: mdl-38697068

RESUMO

BACKGROUND: Interstitial lung diseases (ILD) are a heterogenous group of over 200 disorders affecting the pulmonary interstitium. Although there have been advances in knowledge on ILDs in Australia, the characterisation of the health and economic burden of disease remained largely undetermined until recently. OBJECTIVE: The main objective of this review is to provide a synopsis of health and economic burden of ILDs in Australia, based on recently completed research. DISCUSSION: Recent research has demonstrated that idiopathic pulmonary fibrosis (IPF) is the most frequent ILD in Australia. Incidence and prevalence of IPF have demonstrated an increasing trend over the past decades. Mortality has also increased over the past decades, but has shown a slight decreasing trend recently, since the introduction of antifibrotic medication. Health-related quality of life is poor in patients with IPF, and care is estimated to cost approximately AU$299 million per year in Australia. Early diagnosis and referral to tertiary care is crucial for favourable outcomes, and general practitioners are considerably important to this as the first interface to identify patients at risk and detect early symptoms of ILDs.


Assuntos
Efeitos Psicossociais da Doença , Doenças Pulmonares Intersticiais , Humanos , Doenças Pulmonares Intersticiais/economia , Doenças Pulmonares Intersticiais/terapia , Doenças Pulmonares Intersticiais/epidemiologia , Doenças Pulmonares Intersticiais/fisiopatologia , Austrália/epidemiologia , Qualidade de Vida/psicologia , Prevalência , Adulto , Fibrose Pulmonar Idiopática/economia , Fibrose Pulmonar Idiopática/epidemiologia , Fibrose Pulmonar Idiopática/terapia , Incidência
12.
J Patient Rep Outcomes ; 8(1): 48, 2024 May 02.
Artigo em Inglês | MEDLINE | ID: mdl-38695992

RESUMO

BACKGROUND: General population normative values for the widely used health-related quality of life (HRQoL) measure EORTC QLQ-C30 support the interpretation of trial results and HRQoL of patients in clinical practice. Here, we provide sex-, age- and health condition-specific normative values for the EORTC QLQ-C30 in the French general population. METHODS: French general population data was collected in an international EORTC project. Online panels with quota samples were used to recruit sex and age groups. Number and type of comorbidities were assessed. Descriptive statistics were used to calculate general population values for each QLQ-C30 scale, separately for sex, age, and presence of one- and more chronic health conditions. A multivariate linear regression model has been developed to allow estimating the effect of sex, age, and the presence for one- and more chronic health conditions on EORTC QLQ-C30 scores. Data was weighted according to United Nation statistics adjusting for the proportion of sex and age groups. RESULTS: In total, 1001 French respondents were included in our analyses. The weighted mean age was 47.9 years, 514 (51.3%) participants were women, and 497 (52.2%) participants reported at least one health condition. Men reported statistically significant better scores for Emotional Functioning (+9.6 points, p = 0.006) and Fatigue (-7.8 point; p = 0.04); women reported better profiles for Role Functioning (+8.7 points; p = 0.008) and Financial Difficulty (-7.8 points, p = 0.011). According to the regression model, the sex effect was statistically significant in eight scales; the effect of increasing age had a statistically significant effect on seven of the 15 EORTC QLQ-C30 scales. The sex- and age effect varied in its direction across the various scales. The presence of health conditions showed a strong negative effect on all scales. CONCLUSION: This is the first publication of detailed French normative values for the EORTC QLQ-C30. It aims to support the interpretation of HRQoL profiles in French cancer populations. The strong impact of health conditions on QLQ-C30 scores highlights the importance of considering the impact of comorbidities in cancer patients when interpreting HRQoL data.


Assuntos
Nível de Saúde , Qualidade de Vida , Humanos , Masculino , Feminino , Qualidade de Vida/psicologia , França/epidemiologia , Pessoa de Meia-Idade , Adulto , Idoso , Fatores Etários , Fatores Sexuais , Inquéritos e Questionários , Adulto Jovem , Valores de Referência , Doença Crônica/epidemiologia , Doença Crônica/psicologia , Adolescente , Idoso de 80 Anos ou mais
13.
BMC Prim Care ; 25(1): 149, 2024 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-38702603

RESUMO

BACKGROUND: The impact of lower urinary tract symptoms (LUTS) on the quality of life of patients with benign prostatic hyperplasia (BPH) has been rarely reported. Additionally, the challenges faced by these patients in seeking medical care have often been overlooked. In order to explore the personal struggles caused by LUTS and the difficulties or barriers experienced by Chinese patients with BPH when seeking help, we conducted a qualitative interview study. METHODS: Qualitative interviews were conducted among 46 patients with BPH who were hospitalized in three tertiary hospitals in China from July 2021 to November 2022. Grounded theory was adopted as the methodology for the qualitative study. After obtaining written informed consent from the study participants, semi-structured interviews were conducted according to the question guidelines. The interview process was audio-recorded; subsequently, the recordings were transcribed, coded, and thematically analyzed. RESULTS: The difficulties faced by Chinese patients with BPH were classified into seven main themes: (i) disturbed life, (ii) mental burden, (iii) disease cognition and communication, (iv) delayed treatment, (v) medication status, (vi) hospital visits barriers, and (vii) medical insurance issues. Further, each theme was subdivided into 2-5 sub-themes. CONCLUSIONS: LUTS have a certain effect on the life and spirit of patients with BPH. These patients face different degrees of difficulties in treatment and hospital visits. Therefore, better healthcare systems and additional social support are crucial for improving the current plight of these patients.


Assuntos
Sintomas do Trato Urinário Inferior , Hiperplasia Prostática , Pesquisa Qualitativa , Qualidade de Vida , Humanos , Masculino , Hiperplasia Prostática/psicologia , China , Pessoa de Meia-Idade , Idoso , Qualidade de Vida/psicologia , Sintomas do Trato Urinário Inferior/psicologia , Sintomas do Trato Urinário Inferior/terapia , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Hospitalização , Entrevistas como Assunto , População do Leste Asiático
14.
Neurosurg Focus ; 56(5): E12, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38691854

RESUMO

OBJECTIVE: Chordomas are rare malignant bone tumors whose location in the skull base or spine, invasive surgical treatment, and accompanying adjuvant radiotherapy may all lead patients to experience poor quality of life (QOL). Limited research has been conducted on specific demographic and clinical factors associated with decreased QOL in chordoma survivors. Thus, the aim of the present study was to investigate several potential variables and their impact on specific QOL domains in these patients as well the frequencies of specific QOL challenges within these domains. METHODS: The Chordoma Foundation (CF) Survivorship Survey was electronically distributed to chordoma survivors subscribed to the CF Chordoma Connections forum. Survey questions assessed QOL in three domains: physical, emotional/cognitive, and social. The degree of impairment was assessed by grouping the participants into high- and low-challenge groups designated by having ≥ 5 or < 5 symptoms or challenges within a given QOL domain. Bivariate analysis of demographic and clinical characteristics between these groups was conducted using Fisher's exact test and the Mann-Whitney U-test. RESULTS: A total of 665 chordoma survivors at least partially completed the survey. On bivariate analysis, female sex was significantly associated with increased odds of significant emotional (p = 0.001) and social (p = 0.019) QOL burden. Younger survivors (age < 65 years) were significantly more likely to experience significant physical (p < 0.0001), emotional (p < 0.0001), and social (p < 0.0001) QOL burden. Skull base chordoma survivors had significantly higher emotional/cognitive QOL burden than spinal chordoma survivors (p = 0.022), while the converse was true for social QOL challenges (p = 0.0048). Survivors currently in treatment were significantly more likely to experience significant physical QOL challenges compared with survivors who completed their treatment > 10 years ago (p = 0.0074). Fear of cancer recurrence (FCR) was the most commonly reported emotional/cognitive QOL challenge (49.6%). Only 41% of the participants reported having their needs met for their physical QOL challenges as well as 25% for emotional/cognitive and 18% for social. CONCLUSIONS: The authors' findings suggest that younger survivors, female survivors, and survivors currently undergoing treatment for chordoma are at high risk for adverse QOL outcomes. Additionally, although nearly half of the participants reported a FCR, very few reported having adequate emotional/cognitive care. These findings may be useful in identifying specific groups of chordoma survivors vulnerable to QOL challenges and bring to light the need to expand care to meet the QOL needs for these patients.


Assuntos
Cordoma , Qualidade de Vida , Humanos , Cordoma/psicologia , Cordoma/cirurgia , Qualidade de Vida/psicologia , Feminino , Masculino , Pessoa de Meia-Idade , Adulto , Idoso , Sobreviventes de Câncer/psicologia , Sobrevivência , Inquéritos e Questionários , Adulto Jovem , Adolescente , Idoso de 80 Anos ou mais
15.
Pediatr Surg Int ; 40(1): 119, 2024 May 03.
Artigo em Inglês | MEDLINE | ID: mdl-38700671

RESUMO

PURPOSE: Patients with anorectal malformation (ARM) and Hirschsprung's disease (HD) live with long-term impact of these diseases even into adulthood. We aimed to explore the physical, social and emotional impact of these diseases in adolescents and young adults to develop best practices for transition care. METHODS: We conducted one-on-one in-depth interviews with ARM and HD patients aged ≥ 11 years who had undergone surgery at four tertiary referral centers. All interviews were audio-recorded and transcribed verbatim. We analyzed transcripts for recurring themes, and data were collected until data saturation was reached. Three researchers independently coded the transcripts for major themes using thematic analysis approach. RESULTS: We interviewed 16 participants (11 males) between October 2022 and April 2023. Ages ranged from 11 to 26 years. Five major themes emerged: (1) personal impact (subthemes: physical, emotional and mental health, social, school), (2) impact on family, (3) perceptions of their future (subthemes: relationships, career, state of health), (4) sources of support (subthemes: family, peers, partner), and (5) transition care (subthemes: concerns, expectations). Only females expressed concerns regarding future fertility. CONCLUSION: This study highlights the evolving problems faced by adolescents and young adults with ARM and HD, especially gender-specific concerns. Our findings can inform efforts to provide individualized care.


Assuntos
Malformações Anorretais , Doença de Hirschsprung , Entrevistas como Assunto , Pesquisa Qualitativa , Humanos , Doença de Hirschsprung/psicologia , Doença de Hirschsprung/cirurgia , Feminino , Masculino , Malformações Anorretais/cirurgia , Malformações Anorretais/psicologia , Adolescente , Criança , Adulto , Adulto Jovem , Qualidade de Vida/psicologia , Transição para Assistência do Adulto
16.
Front Public Health ; 12: 1362240, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38689774

RESUMO

Background: The COVID-19 pandemic had a global impact on people life, notably because of lockdown periods. This could particularly affected patients suffering from hip fracture, who could have been more isolated during these periods. We aim at evaluating the impact of the COVID-19 period (including lockdown periods) on quality of life (QOL) in older adult patients 90 days after a surgery for a hip fracture. Subject and methods: Ancillary study of the prospective randomized controlled HiFIT study. We compared the QOL measured at 90 days after a hip fracture surgery using the EuroQOL-5 dimensions 3 levels (EQ-5D), the Perceived Quality of life (PQOL) and the Instrumental Activities of Daily Living (IADL) in patients included in the Hifit study before and during the COVID-19 pandemic. Results: The characteristics of the 161 patients included before and of the 213 included during the COVID period (including 122 (57%) during COVID with containment periods and 91 (43%) during COVID without containment periods) were similar (mean age 84 ± 10 years; 282 (75%) women). The majority (81%) of the patients alive at 90 days had returned to their previous place of residence in both periods. During the COVID period, EQ-5D showed better patient pain/discomfort and anxiety/depression levels. The PQOL happiness was not different, with around 81% of the patient being "happy" or "very happy" during the two periods and the IADL was also similar during the two periods. In the multivariate analysis odd ratios of having poorer outcomes were increased before COVID for pain/discomfort (OR 2.38, 95%CI [1.41-4.15], p = 0.001), anxiety (OR 1.89 [1.12-3.21], p = 0.017) and mobility (1.69 [1.02-2.86], p = 0.044). Conclusion: Patient's quality of life measured using different scales was not altered during the COVID period compared to before COVID, 90 days after a hip fracture. Surprisingly, the Pain/Discomfort and Anxiety dimensions of the EQ-5D questionnaires were even better during the COVID period.Clinical trial registration:https://clinicaltrials.gov/ (NCT02972294).


Assuntos
Atividades Cotidianas , COVID-19 , Fraturas do Quadril , Qualidade de Vida , Humanos , Fraturas do Quadril/cirurgia , Fraturas do Quadril/psicologia , COVID-19/psicologia , Qualidade de Vida/psicologia , Feminino , Masculino , Idoso de 80 Anos ou mais , Estudos Prospectivos , Atividades Cotidianas/psicologia , Idoso , SARS-CoV-2 , Inquéritos e Questionários
17.
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
18.
BMC Psychol ; 12(1): 221, 2024 Apr 22.
Artigo em Inglês | MEDLINE | ID: mdl-38650048

RESUMO

BACKGROUND: Cancer is a considerable health problem worldwide and the second leading cause of death in children. It has many physical, psychological, and social consequences for children and their families. The ability to adapt to cancer plays a vital role in the recovery and quality of life of affected children. This study aimed to explain the adaptation of children with cancer to their disease. METHODS: This qualitative study adopted the directed content analysis approach based on the Roy nursing model. The participants were nine children with cancer aged 6-18 years old, five family members, four nurses, one doctor, one teacher, and two charity association members, recruited by purposive sampling method. The information was collected via individual semi-structured interviews, a focus group discussion, and field notes. The data were analyzed simultaneously with data collection using the Elo and Kyngäs method. The study rigor was ensured based on the Guba and Lincoln criteria. FINDINGS: Of the four categories of physical challenges, fragile self-concept, the difficulty of role transition, and disruption of the path to independence, the theme of Falling and rising in the cancer vortex was abstracted. CONCLUSION: Based on the Roy model, the children in the present study were at the compensatory level of adaptation. This research demonstrates that the adaptation of children being treated for cancer is fragile and not constant. With each hospitalization and exacerbation of the disease, they made efforts to adapt to their disease using regulatory and cognitive subsystems. Paying attention to different stimulants and the effects of support systems on physical challenges, fragile self-concept, difficult role transition, and disruption of the path to independence for each child, as well as providing individualized care for these children, can help their adaptation to and healthy transition from the vortex of cancer. The Roy adaptation model was helpful and efficient for elucidating the adaptation of children with cancer. Providing care for children by healthcare specialists, especially nurses, should be theory-based and individualized.


Assuntos
Adaptação Psicológica , Neoplasias , Pesquisa Qualitativa , Humanos , Criança , Neoplasias/psicologia , Adolescente , Feminino , Masculino , Autoimagem , Qualidade de Vida/psicologia , Família/psicologia
19.
Ital J Dermatol Venerol ; 159(2): 174-181, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38650497

RESUMO

BACKGROUND: Acne is a chronic inflammatory disease predominantly affecting young people. This study was undertaken to assess the impact of acne in young adults on their major life-changing decisions (MLCD), paying attention to the relationships between major life-changing decisions profile (MLCDP) and Quality of Life (QoL), feeling of stigmatization and acceptance of the disease. METHODS: The study was performed on 213 young people diagnosed with acne. A variety of questionnaires were employed to measure the clinical and psychological aspects of acne. RESULTS: The majority of patients (N.=148, 73.3%) reported at least one MLCD that acne affected in any way (mean number 2.9±3.2, range: 0-18). The most common MLCD influenced by acne appeared to be a decision of changing eating habits (N.=132, 65.3%), followed by changing habits associated with smoking and alcohol (N.=85, 42.1%) and deciding to be more active physically (N.=61, 30.2%). The total score of MLCDP ranged from 0 to 33 points (mean 5.41±6.23 points). MLCDP total score significantly correlated with clinical acne severity (P=0.006), QoL (P<0.001), stigmatization (P<0.001) and illness acceptance (P<0.001). CONCLUSIONS: Acne has an important impact on life-changing decisions in young adults. MLCDP correlates with impaired QoL, level of stigmatization and degree of illness acceptance. This should be taken into consideration in the holistic approach to acne patients.


Assuntos
Acne Vulgar , Qualidade de Vida , Humanos , Acne Vulgar/psicologia , Qualidade de Vida/psicologia , Masculino , Feminino , Adulto Jovem , Adolescente , Adulto , Inquéritos e Questionários , Tomada de Decisões , Comportamento Alimentar/psicologia , Índice de Gravidade de Doença , Fumar/psicologia
20.
JMIR Mhealth Uhealth ; 12: e48756, 2024 Apr 22.
Artigo em Inglês | MEDLINE | ID: mdl-38648103

RESUMO

BACKGROUND: Coronary heart disease is one of the leading causes of mortality worldwide. Secondary prevention is essential, as it reduces the risk of further coronary events. Mobile health (mHealth) technology could become a useful tool to improve lifestyles. OBJECTIVE: This study aimed to evaluate the effect of an mHealth intervention on people with coronary heart disease who received percutaneous coronary intervention. Improvements in lifestyle regarding diet, physical activity, and smoking; level of knowledge of a healthy lifestyle and the control of cardiovascular risk factors (CVRFs); and therapeutic adherence and quality of life were analyzed. METHODS: This was a randomized controlled trial with a parallel group design assigned 1:1 to either an intervention involving a smartphone app (mHealth group) or to standard health care (control group). The app was used for setting aims, the self-monitoring of lifestyle and CVRFs using measurements and records, educating people with access to information on their screens about healthy lifestyles and adhering to treatment, and giving motivation through feedback about achievements and aspects to improve. Both groups were assessed after 9 months. The primary outcome variables were adherence to the Mediterranean diet, frequency of food consumed, patient-reported physical activity, smoking, knowledge of healthy lifestyles and the control of CVRFs, adherence to treatment, quality of life, well-being, and satisfaction. RESULTS: The study analyzed 128 patients, 67 in the mHealth group and 61 in the control group; most were male (92/128, 71.9%), with a mean age of 59.49 (SD 8.97) years. Significant improvements were observed in the mHealth group compared with the control group regarding adherence to the Mediterranean diet (mean 11.83, SD 1.74 points vs mean 10.14, SD 2.02 points; P<.001), frequency of food consumption, patient-reported physical activity (mean 619.14, SD 318.21 min/week vs mean 471.70, SD 261.43 min/week; P=.007), giving up smoking (25/67, 75% vs 11/61, 42%; P=.01), level of knowledge of healthy lifestyles and the control of CVRFs (mean 118.70, SD 2.65 points vs mean 111.25, SD 9.05 points; P<.001), and the physical component of the quality of life 12-item Short Form survey (SF-12; mean 45.80, SD 10.79 points vs mean 41.40, SD 10.78 points; P=.02). Overall satisfaction was higher in the mHealth group (mean 48.22, SD 3.89 vs mean 46.00, SD 4.82 points; P=.002) and app satisfaction and usability were high (mean 44.38, SD 6.18 out of 50 points and mean 95.22, SD 7.37 out of 100). CONCLUSIONS: The EVITE app was effective in improving the lifestyle of patients in terms of adherence to the Mediterranean diet, frequency of healthy food consumption, physical activity, giving up smoking, knowledge of healthy lifestyles and controlling CVRFs, quality of life, and overall satisfaction. The app satisfaction and usability were excellent. TRIAL REGISTRATION: Clinicaltrials.gov NCT04118504; https://clinicaltrials.gov/study/NCT04118504.


Assuntos
Aplicativos Móveis , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Aplicativos Móveis/normas , Aplicativos Móveis/estatística & dados numéricos , Idoso , Qualidade de Vida/psicologia , Doença das Coronárias/psicologia , Doença das Coronárias/prevenção & controle , Estilo de Vida , Telemedicina/métodos , Telemedicina/normas , Telemedicina/estatística & dados numéricos
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