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BACKGROUND: Health-related quality of life (HRQoL) reflects an individual's perception of their physical and mental health over time. Despite numerous studies linking physical activity to improved HRQoL, most rely on self-reported data, limiting the accuracy and generalizability of findings. This study leverages objective accelerometer data to explore the association between physical activity and HRQoL in Korean adults. OBJECTIVE: The objective of this study is to analyze the relationship between objectively measured physical activity using accelerometers and HRQoL among Korean adults, aiming to inform targeted interventions for enhancing HRQoL through physical activity. METHODS: This observational study included 1298 participants aged 19-64 years from the Korea National Health and Nutrition Examination Survey (KNHANES) VI, who wore an accelerometer for 7 consecutive days. HRQoL was assessed using the EQ-5D questionnaire, and physical activity was quantified as moderate-to-vigorous physical activity accelerometer-total (MVPA-AT) and accelerometer-bout (MVPA-AB). Data were analyzed using logistic regression to determine the odds ratio (ORs) for low HRQoL, adjusting for socioeconomic variables and mental health factors. RESULTS: Participants with higher HRQoL were younger, more likely to be male, single, highly educated, employed in white-collar jobs, and had higher household incomes. They also reported less stress and better subjective health status. The high HRQoL group had significantly more participants meeting MVPA-AB ≥600 metabolic equivalents (P<.01). Logistic regression showed that participants meeting MVPA-AB ≥600 metabolic equivalents had higher odds of high HRQoL (OR 1.55, 95% CI 1.11-2.17). Adjusted models showed consistent results, although the association weakened when adjusting for mental health factors (OR 1.45, 95% CI 1.01-2.09). CONCLUSIONS: The study demonstrates a significant association between HRQoL and moderate to vigorous physical activity sustained for at least 10 minutes, as measured by accelerometer. These findings support promoting physical activity, particularly sustained moderate to vigorous activity, to enhance HRQoL. Further interventional studies focusing on specific physical activity domains such as occupational, leisure-time, and commuting activities are warranted.
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Acelerometria , Exercício Físico , Inquéritos Nutricionais , Qualidade de Vida , Humanos , Masculino , República da Coreia/epidemiologia , Adulto , Qualidade de Vida/psicologia , Exercício Físico/psicologia , Feminino , Pessoa de Meia-Idade , Adulto Jovem , Inquéritos e QuestionáriosRESUMO
Existing research supports the therapeutic value of hope in different therapies and for diverse patient groups. Patients who are socially inhibited tend to have a particularly difficult time in group therapy, and the experience of hope in that context may be especially poignant for them. The present study investigated the impact of hope on the outcome of a group-based treatment and whether this impact differed for patients depending on their level of social inhibition. The sample consisted of 49 consecutively admitted patients who completed treatment in an intensive, integrative group therapy program. Patients completed four self-report measures to assess hope, social inhibition, quality of life, and depression. Regression with moderation analysis was employed. The analyses revealed that social inhibition significantly moderated the impact of hope on treatment outcome, indicating that hope had a more pronounced effect among those patients with relatively higher levels of social inhibition.
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Esperança , Psicoterapia de Grupo , Humanos , Psicoterapia de Grupo/métodos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Inibição Psicológica , Qualidade de Vida/psicologia , Resultado do Tratamento , Depressão/terapia , Depressão/psicologiaRESUMO
BACKGROUND: The main objective of this study was to examine the burden of schizophrenia, depression, Alzheimer's disease/dementia, and stroke on caregivers and non-caregivers in Japan. This study also aimed to provide a comparative landscape on the burden of caregiving for each disorder. METHODS: The Japan National Health and Wellness Survey database, 2016 and 2018 was used in this study. Health-related quality of life (HRQoL), work productivity, and health care utilization were assessed using a self-administered, Internet-based questionnaire. The burden of caregiving experienced by each group of caregivers was compared with background-matched non-caregivers (controls) as well as with caregivers of patients with each disorder. RESULTS: Caregivers of patients with schizophrenia, depression, Alzheimer's disease/dementia, or stroke had lower HRQoL, higher healthcare costs and work productivity impairment than non-caregivers. Furthermore, caregivers of patients with psychiatric disorders such as schizophrenia and depression had lower HRQoL and work productivity than caregivers of patients with Alzheimer's disease/dementia and stroke. In addition, according to the Caregiver Reaction Assessment (CRA), caregivers of patients with schizophrenia and depression were more inclined to perceive a loss in physical strength and financial burden to the same extent as their self-esteem. CONCLUSIONS: This study indicated a substantial caregiving burden among caregivers of patients with psychiatric and neurological diseases in Japan. The caregiver burden of psychiatric disorders (schizophrenia and depression) was greater than that of neurological disorders (Alzheimer's disease/dementia and stroke), suggesting a need to provide support to caregivers of patients with psychiatric disorders to be better able to care for their patients. TRIAL REGISTRATION: None.
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Cuidadores , Demência , Qualidade de Vida , Esquizofrenia , Acidente Vascular Cerebral , Humanos , Qualidade de Vida/psicologia , Masculino , Japão , Feminino , Esquizofrenia/enfermagem , Pessoa de Meia-Idade , Cuidadores/psicologia , Adulto , Acidente Vascular Cerebral/psicologia , Acidente Vascular Cerebral/enfermagem , Acidente Vascular Cerebral/economia , Demência/enfermagem , Demência/psicologia , Eficiência , Idoso , Depressão/psicologia , Efeitos Psicossociais da Doença , Sobrecarga do Cuidador/psicologia , Doença de Alzheimer/psicologia , Doença de Alzheimer/enfermagemRESUMO
BACKGROUND: N-methyl-D-aspartate-receptor (NMDAR) encephalitis is a rare neurological autoimmune disease with severe neuropsychiatric symptoms during the acute phase. Despite good functional neurological recovery, most patients continue to experience cognitive, psychiatric, psychological, and social impairments years after the acute phase. However, the precise nature and evolving patterns over time of these long-term consequences remain unclear, and their implications for the well-being and quality of life of predominantly young patients have yet to be thoroughly examined. METHODS: SAPIENCE is a European multi-center (n = 3) prospective observational cohort study studying the long-term cognitive, psychiatric, psychological, and social outcome in patients with NMDAR encephalitis. The study consists of three interconnected levels. Level 1 comprises a qualitative interview and focus groups with patients and their caregivers. Level 2 consists of a condensed form of the interview, standardized questionnaires, and a detailed neuropsychological examination of patients. Level 3 involves an online survey that will be open to patients world-wide and explores patient-reported outcomes (PROMs), and patient-reported experiences (PREMs) in association with clinical and cognitive outcomes. Levels 1 to 3 will progressively contribute developing of structured interviews, survey questions, and treatment guidelines by informing one another. DISCUSSION: SAPIENCE is an in-depth study of the long-term effects of NMDAR encephalitis and bridges the gap between standardized assessments and individual patient experiences, intending to improve patient care and to increase awareness of the psychosocial long-term consequences of the disease. Through collaboration of experts in clinical neurology and social and health psychology across Europe, SAPIENCE aims to create online assessment tools and formulate guidelines for patient-centered post-acute care that will help enhance the quality of life for patients and caregivers.
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Encefalite Antirreceptor de N-Metil-D-Aspartato , Humanos , Encefalite Antirreceptor de N-Metil-D-Aspartato/psicologia , Encefalite Antirreceptor de N-Metil-D-Aspartato/complicações , Qualidade de Vida/psicologia , Estudos Prospectivos , Feminino , Estudos de Coortes , Masculino , Europa (Continente)/epidemiologia , Adulto , Testes Neuropsicológicos , Medidas de Resultados Relatados pelo PacienteRESUMO
BACKGROUND: Diabetes-specific quality of life (QoL) questionnaires are commonly used to assess the impact of diabetes and its management on an individual's quality of life. While several valid and reliable measures of diabetes-specific QoL exist, there is no consensus on which to use and in what setting. Furthermore, there is limited evidence of their acceptability to people with diabetes. Our aim was to explore perceptions of adults with type 1 diabetes (T1D) toward five diabetes-specific QoL measures. METHODS: Adults (aged 18 + years) with T1D living in Australia or the United Kingdom (UK) were eligible to take part in 'YourSAY: QoL', an online cross-sectional survey. Recruitment involved study promotion on diabetes-related websites and social media, as well as direct invitation of people with T1D via a hospital client list (UK only). In random order, participants completed five diabetes-specific QoL measures: Audit of Diabetes-Dependent Quality of Life (ADDQoL-19); Diabetes Care Profile: Social and Personal Factors subscale (DCP); DAWN Impact of Diabetes Profile (DIDP); Diabetes-Specific Quality of Life Scale: Burden Subscale (DSQoLS); Diabetes Quality of Life Questionnaire (Diabetes QOL-Q). They were invited to provide feedback on each questionnaire in the form of a brief free-text response. Responses were analysed using inductive, thematic template analysis. RESULTS: Of the N = 1,946 adults with T1D who completed the survey, 20% (UK: n = 216, Australia: n = 168) provided qualitative responses about ≥ 1 measure. All measures received both positive and negative feedback, across four themes: (1) clarity and ease of completion, e.g., difficulty isolating impact of diabetes, dislike of hypothetical questions, and preference for 'not applicable' response options; (2) relevance and comprehensiveness, e.g., inclusion of a wide range of aspects of life to improve personal relevance; (3) length and repetition, e.g., length to be balanced against respondent burden; (4) framing and tone, e.g., preference for respectful language and avoidance of extremes. CONCLUSIONS: These findings suggest opportunities to improve the relevance and acceptability of existing diabetes-specific QoL measures, and offer considerations for developing new measures, which need to be better informed by the preferences of people living with diabetes.
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Diabetes Mellitus Tipo 1 , Pesquisa Qualitativa , Qualidade de Vida , Humanos , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/terapia , Qualidade de Vida/psicologia , Masculino , Feminino , Adulto , Estudos Transversais , Inquéritos e Questionários , Pessoa de Meia-Idade , Austrália , Reino Unido , Adulto Jovem , Adolescente , Idoso , Percepção , PsicometriaRESUMO
Importance: Robotic exoskeletons leverage technology that assists people with spinal cord injury (SCI) to walk. The efficacy of home and community exoskeletal use has not been studied in a randomized clinical trial (RCT). Objective: To examine whether use of a wheelchair plus an exoskeleton compared with use of only a wheelchair led to clinically meaningful net improvements in patient-reported outcomes for mental and physical health. Design, Setting, and Participants: This RCT of veterans with SCI was conducted at 15 Veterans Affairs medical centers in the US from September 6, 2016, to September 27, 2021. Data analysis was performed from March 10, 2022, to June 20, 2024. Interventions: Participants were randomized (1:1) to standard of care (SOC) wheelchair use or SOC plus at-will use of a US Food and Drug Administration (FDA)-cleared exoskeletal-assisted walking (EAW) device for 4 months in the home and community. Main Outcomes and Measures: Two primary outcomes were studied: 4.0-point or greater improvement in the mental component summary score on the Veterans RAND 36-Item Health Survey (MCS/VR-36) and 10% improvement in the total T score of the Spinal Cord Injury-Quality of Life (SCI-QOL) physical and medical health domain and reported as the proportion who achieved clinically meaningful changes. The primary outcomes were measured at baseline, post randomization after advanced EAW training sessions, and at 2 months and 4 months (primary end point) in the intervention period. Device usage, reasons for not using, and adverse events were collected. Results: A total of 161 veterans with SCI were randomized to the EAW (n = 78) or SOC (n = 83) group; 151 (94%) were male, the median age was 47 (IQR, 35-56) years, and median time since SCI was 7.3 (IQR, 0.5 to 46.5) years. The difference in proportion of successes between the EAW and SOC groups on the MCS/VR-36 (12 of 78 [15.4%] vs 14 of 83 [16.9%]; relative risk, 0.91; 95% CI, 0.45-1.85) and SCI-QOL physical and medical health domain (10 of 78 [12.8%] vs 11 of 83 [13.3%]; relative risk, 0.97; 95% CI, 0.44-2.15) was not statistically different. Device use was lower than expected (mean [SD] distance, 1.53 [0.02] miles per month), primarily due to the FDA-mandated companion being unavailable 43.9% of the time (177 of 403 instances). Two EAW-related foot fractures and 9 unrelated fractures (mostly during wheelchair transfers) were reported. Conclusions and Relevance: In this RCT of veterans with SCI, the lack of improved outcomes with EAW device use may have been related to the relatively low device usage. Solutions for companion requirements and user-friendly technological adaptations should be considered for improved personal use of these devices. Trial Registration: ClinicalTrials.gov Identifier: NCT02658656.
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Exoesqueleto Energizado , Traumatismos da Medula Espinal , Veteranos , Caminhada , Humanos , Masculino , Pessoa de Meia-Idade , Feminino , Veteranos/psicologia , Traumatismos da Medula Espinal/psicologia , Traumatismos da Medula Espinal/reabilitação , Adulto , Medidas de Resultados Relatados pelo Paciente , Paralisia/reabilitação , Paralisia/psicologia , Estados Unidos , Qualidade de Vida/psicologiaRESUMO
BACKGROUND: Tension-type headache (TTH) and migraine are prevalent neurological conditions in children and adolescents that significantly impact activity of daily living (ADL) and quality of life (QOL). Although physical therapy targeting cervical myofascial trigger points (MTrPs) on TTH and migraine has been extensively studied in adults, the efficacy in pediatric patients remains unexplored. The aim of this study is to reveal the effect of physical therapy integrated with pharmacotherapy on TTH and migraine in children and adolescents. METHODS: We conducted a prospective, observational cohort study recruiting consecutive patients aged 6 to 18 years with TTH and migraine with cervical MTrPs. They were classified into 4 types of headaches: frequent episodic TTH (FRTTH), chronic TTH (CTTH), episodic migraine (EM) and chronic migraine (CM). The once-weekly 40-minutes physical therapy session integrated with pharmacotherapy (integrated physical therapy) was continued until the treatment goals (headache days per week less than 2 days, headache impact test-6 (HIT-6) score to below of 50, and the ability to attend school daily) was achieved. Multifaceted assessments including headache frequency (headache days per week), headache intensity using the Visual Analogue Scale (VAS), pain catastrophizing score (PCS), hospital anxiety and depression scale (HADS) score, HIT-6 scores, and EuroQol 5 dimensions 5-level questionnaire (EQ-5D-5 L) scores, were conducted to evaluate the treatment effects. RESULTS: 161 patients were enrolled in this study. 106 patients (65.8%) were diagnosed with TTH: 70 (66.8%) with FETHH, 36 (34.0%) with CTTH, and 55 patients (34.2%) were diagnosed with migraine: 43 patients (78.2%) with EM, 12 patients (21.8%) with CM. We observed significant improvements in headache frequency, headache intensity, PCS, HADS score, HIT-6 scores, and EQ-5D-5 L scores before and after the treatment in all 4 types of headaches. The average number of sessions required to achieve the treatment goals was 4 times (weeks) for patients with FETTH and EM, 5.5 for those with CTTH, and 7.5 for those with chronic migraine. CONCLUSION: The integrated physical therapy on pediatric TTH and migraine patients with the cervical MTrPs was significantly effective in reducing headache symptoms and improving ADL and QOL.
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Transtornos de Enxaqueca , Modalidades de Fisioterapia , Cefaleia do Tipo Tensional , Humanos , Cefaleia do Tipo Tensional/terapia , Cefaleia do Tipo Tensional/tratamento farmacológico , Adolescente , Feminino , Criança , Masculino , Transtornos de Enxaqueca/terapia , Transtornos de Enxaqueca/tratamento farmacológico , Estudos Prospectivos , Resultado do Tratamento , Terapia Combinada/métodos , Estudos de Coortes , Qualidade de Vida/psicologiaRESUMO
BACKGROUND: Low physical activity among older adults is related to adverse health outcomes such as depression and loneliness, poor physical function and increased risk of falls. This study was designed to increase physical activity through a digital, group-based, physical activity and music intervention and to examine its effectiveness on social, mental and physical health outcomes. METHODS: Participants were 34 older adults (65 years +) recruited across four care homes in Scotland to a pilot study. Surveys were administered at baseline and post-intervention, comprising measures of fear of falling, depression and anxiety, loneliness, sleep satisfaction and quality of life. A battery of physical function tests and saliva sampling for cortisol and dehydroepiandrosterone hormone analysis were also conducted at each time point. Additionally, process evaluation measures (recruitment, intervention fidelity, attendance, retention rates and safety) were monitored. The intervention comprised 12 weeks of three prescribed digital sessions per week: movement and music (n = 2) and music-only (n = 1), delivered by an activity coordinator in the care home. Post-intervention interviews with staff and participants were conducted to gain qualitative data on the acceptability of the intervention. RESULTS: An average of 88% of prescribed sessions were delivered. Pre- to post-intervention intention-to-treat analysis across all participants revealed significant improvements in anxiety, salivary DHEA, fear of falling and loneliness. There were no significant improvements in health-related quality of life, perceived stress, sleep satisfaction or physical function tests, including handgrip strength. Qualitative analysis highlighted benefits of and barriers to the programme. CONCLUSIONS: The digital movement and music intervention was deemed acceptable and delivered with moderate fidelity, justifying progression to a full-scale trial. Although a proper control group would have yielded more confident causal relationships, preliminary psychosocial and biological effects were evident from this trial. To show significant improvements in physical function, it is likely that a bigger sample size providing sufficient power to detect significant changes, greater adherence, longer intervention and/or higher exercise volume may be necessary. TRIAL REGISTRATION: The trial is registered at ClinicalTrials.gov, number NCT05601102 on 01/11/2022.
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Instituição de Longa Permanência para Idosos , Musicoterapia , Bem-Estar Psicológico , Qualidade de Vida , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Acidentes por Quedas/prevenção & controle , Ansiedade/terapia , Ansiedade/psicologia , Depressão/terapia , Depressão/psicologia , Exercício Físico/fisiologia , Exercício Físico/psicologia , Solidão/psicologia , Musicoterapia/métodos , Casas de Saúde , Projetos Piloto , Qualidade de Vida/psicologia , EscóciaRESUMO
Introduction: Neurofibromatosis type 1 (NF1) is a rare genetic disorder, with lack of evidence of disease burden in China. We aimed to describe the economic burden, health-related quality of life (HRQL), and caregiver burden of NF1 patients in China. Methods: We conducted an online cross-sectional survey employing the China Cloud Platform for Rare Diseases, with 223 caregivers of NF1 pediatric patients (patients under 18), and 226 adult patients. Economic burden was estimated using direct and indirect costs related to NF1 in 2021, and the Work Productivity and Activity Impairment Questionnaire: General Health V2.0 (WPAI-GH). HRQL measures included EQ-5D-Y proxy version and PedsQL™ 4.0 Generic Core Scales (PedsQL GCS) proxy version for pediatric patients, and EQ-5D-5L and PedsQL™ 3.0 Neurofibromatosis Module (PedsQL NFM) for adult patients. Caregiver burden was estimated by Zarit Burden Interview (ZBI). Results: For pediatric patients, the average direct cost in 2021 was CNY 33,614 (USD 4,879), and employed caregivers' annual productivity loss was 81 days. EQ-5D-Y utility was 0.880 ± 0.13 and VAS score was 75.38 ± 20.67, with 52.6% patients reporting having problems in "pain/discomfort" and 42.9% in "anxiety/depression." PedsQL GCS total score was 68.47 ± 19.42. ZBI score demonstrated that 39.5% of caregivers had moderate-to-severe or severe burden. For adult patients, average direct cost in 2021 was CNY 24,531 (USD 3,560). Patients in employment reported an absenteeism of 8.5% and presenteeism of 21.6% according to the results of WPAI-GH. EQ-5D-5L utility was 0.843 ± 0.17 and VAS score was 72.32 ± 23.49, with more than half of patients reporting having problems in "pain/discomfort" and "anxiety/depression" dimensions. PedsQL NFM total score was 68.40 ± 15.57. Conclusion: Both pediatric and adult NF1 patients in China had a wide-ranging economic burden and low HRQL, especially in the psychological dimension. Caregivers for NF1 pediatric patients experienced considerable caregiver burden. More attention and support from policymakers and stakeholders are required to relieve NF1 patients' and caregivers' distress.
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Sobrecarga do Cuidador , Efeitos Psicossociais da Doença , Neurofibromatose 1 , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , China , Neurofibromatose 1/psicologia , Masculino , Feminino , Estudos Transversais , Adulto , Criança , Adolescente , Sobrecarga do Cuidador/psicologia , Inquéritos e Questionários , Pessoa de Meia-Idade , Cuidadores/psicologia , Cuidadores/estatística & dados numéricos , Cuidadores/economia , Adulto Jovem , Pré-EscolarRESUMO
BACKGROUND: Numerous military soldiers have lost limbs as a result of the Syrian War. While there are variations between trauma-related amputations in military and civilian populations, both scenarios result in life-changing injuries. OBJECTIVE: To explore the relationship between body image, self-esteem, and quality of life (QOL) domains following trauma-related major amputation. It will be the first study in Syria on the correlation between self-esteem and body image. It will help improve our quality of care to meet patient needs and increase well-being, which in turn will help to address body image, self-esteem, and QOL. METHOD: A cross-sectional study that recruited 235 soldiers with amputations in two centers and two military hospitals in Latakia and Tartous. Patients were given an 81-item questionnaire that included the Amputee Body-Image Scale (ABIS), the Rosenberg Self-esteem (RSE) scale, the WHOQOL-BREF questionnaire, and unidimensional pain measures. The ANOVA test, a student's t-test, multiple linear regression, internal consistency, and test-retest reliability were utilized for statistical analysis. RESULTS: There was a strong relationship between body image, self-esteem, and QOL, with the presence of body image concerns significantly associated with lower self-esteem scores and lower QOL scores (p=0.001). Patients with phantom pain sensation had significantly reduced self-esteem (p =0.001), greater body image concerns (p =0.001), and lower scores in all domains of QOL. We found that body image and self-esteem impacted the psychological, social, and environmental domains. After controlling for pain level and number of co-morbid conditions, body image and self-esteem did not predict WHOQOL-BREF scores, with the exception of the environmental domain, where no pain and low self-esteem predicted better environmental domain scores. CONCLUSION: Patients' body image and self-esteem were greatly impacted by lower-limb amputations. Additionally, phantom pain further impacted self-esteem, body image, and QOL. The image of the body had a profound effect on psychological, social, and environmental domains, and self-esteem was influenced by almost all aspects of QOL.
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Imagem Corporal , Qualidade de Vida , Autoimagem , Humanos , Imagem Corporal/psicologia , Qualidade de Vida/psicologia , Masculino , Estudos Transversais , Adulto , Síria , Feminino , Inquéritos e Questionários , Amputados/psicologia , Militares/psicologiaRESUMO
AIM: This study aims to develop the Quality of Life in Pregnancy Scale (PREG-QOL) as a new instrument to evaluate the quality of life during pregnancy and test its psychometric properties. DESIGN: An instrument development study and psychometric testing of the content and construct validity, factor structure and reliability. METHODS: The study was conducted in three stages: (1) creating an item pool, (2) preliminary evaluation of items, and (3) refining the scale and evaluating psychometric properties. Instrument development guidelines were used to evaluate content validity, construct validity, internal consistency and stability of the instrument over time. Data to evaluate psychometric properties of the PREG-QOL were collected between April and August 2021. RESULTS: Items were developed using in-depth interviews with pregnant women and extensive literature review. Scale-content validity index was 0.98. Exploratory factor analysis revealed a 26-item instrument with 6 factors, which explained % 56.2 of variance. Confirmatory factor analysis (CFA) showed that factors 3 and 5 should be combined into the factor of physical domain since they included items about the same theme. Fit indices obtained by CFA were at sufficient levels. Parallel test method was employed to evaluate the correlation of the PREG-QOL with the SF-36. The findings indicated that the PREG-QOL had high internal inconsistency and stability over time. CONCLUSION: The PREG-QOL is a valid and reliable instrument in terms of its psychometric characteristics. The 26-item instrument was composed of the five factors of perception of general satisfaction, emotional domain, physical domain, health support systems and social domain. IMPACT: Displaying good psychometric properties, the PREG-QOL may be used to evaluate multiple dimensions of the quality of life during pregnancy.
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Psicometria , Qualidade de Vida , Humanos , Feminino , Qualidade de Vida/psicologia , Gravidez , Adulto , Reprodutibilidade dos Testes , Inquéritos e Questionários/normas , Análise Fatorial , Gestantes/psicologia , Adulto JovemRESUMO
PURPOSE: This study aimed to develop a Quality of Life (QOL) assessment scale for older patients with Neuro-co-Cardiological Diseases (NCCD) and to evaluate the reliability and validity of the scale. METHOD: The study participants were derived from the Elderly Individuals with NCCD Registered Cohort Study (EINCCDRCS), a multicenter registry of patients with NCCD. The preliminary testing of the questionnaire was conducted among 10 older individuals aged 65 years and older who had NCCD and were recruited from the registry. Other patients who met the inclusion criteria participated in the field testing. After verifying the unidimensionality, local independence, and monotonicity assumptions of the scale, we employed the Rasch model within Item Response Theory framework to assess the quality of the scale through methods including internal consistency, criterion validity, Wright map, and item functioning differential. Subsequently, we assessed the construct validity of the scale by combining exploratory factor analysis with confirmatory factor analysis. RESULTS: Based on well-validated scales such as the short-form WHOQOL-OLD, HeartQOL, IQCODE, and SF-36, an original Neuro-co-Cardiological Diseases Quality of Life scale (NCCDQOL) was developed. 196 individuals from the EINCCDRCS were included in the study, with 10 participating in the preliminary testing and 186 in the field testing. Based on the results of the preliminary testing, the original questionnaire was refined through item deletion and adjustment, resulting in an 11-item NCCDQOL questionnaire. The Rasch analysis of the field testing data led to the removal of 21 misfitting individuals. The NCCDQOL demonstrated a four-category structure, achieved by combining two response categories. This structure aligned with the assumptions of unidimensionality, local independence, and monotonicity. The NCCDQOL also exhibited good validity and reliability. CONCLUSION: The revised NCCDQOL questionnaire demonstrated good reliability and validity in the Rasch model, indicating promising potential for clinical application.
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Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Idoso , Masculino , Feminino , Inquéritos e Questionários/normas , Estudos de Coortes , Idoso de 80 Anos ou mais , Doenças do Sistema Nervoso/psicologia , Doenças do Sistema Nervoso/diagnóstico , Cardiopatias/psicologia , Cardiopatias/diagnóstico , Reprodutibilidade dos Testes , Sistema de Registros , ComorbidadeRESUMO
Objectives: This study aimed to determine the health-related quality of life (HRQoL) of adult Omani patients with sickle cell disease (SCD). The quality of life of these patients in Oman is unknown. Methods: This cross-sectional study was conducted at the Sultan Qaboos University Hospital, Muscat, Oman, from June to October 2022 and included patients with SCD. A validated Arabic version of the 36-Item Short-Form Health Survey (SF-36) was used to assess HRQoL in 8 domains. Results: A total of 235 patients with SCD were included in this study, the majority of whom were female (74.9%) and between 18 and 35 years of age (64.6%). The lowest HRQoL was reported for the domain of role limitations due to physical health (median score = 25.0, interquartile range [IQR] = 35.0), while the highest was seen for role limitations due to emotional problems (median score = 66.7, IQR = 100.0). Frequent SCD-related emergency department visits/hospital admissions and the adverse effect of SCD on patients' social lives had a significant negative impact on SF-36 scores for all 8 HRQoL domains (P ≤0.05). Additionally, SCD's impact on academic performance and a history of having been bullied due to SCD had a significant negative impact on SF-36 scores for 7 domains (P ≤0.05). Conclusion: Omani adult patients with SCD reported relatively poor HRQoL in several domains, with various factors found to be significantly associated with this. Healthcare providers and policy makers should consider offering additional clinical, educational and financial support to these patients to enhance their HRQoL.
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Anemia Falciforme , Hospitais Universitários , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Anemia Falciforme/psicologia , Anemia Falciforme/epidemiologia , Omã/epidemiologia , Masculino , Feminino , Adulto , Estudos Transversais , Adolescente , Hospitais Universitários/estatística & dados numéricos , Inquéritos e Questionários , Adulto Jovem , Pessoa de Meia-IdadeRESUMO
Aim: To study the longitudinal relationship between loneliness and quality of life (QoL) in adults to identify key mechanisms to better design future psychosocial interventions. Method: 13,222 participants from three consecutive waves of the Survey of Health, Ageing, and Retirement in Europe (SHARE), aged 65 or older, 56.3% women. They were analyzed using cross-lagged panel model (CLPM), random intercept cross-lagged panel model (RI-CLPM), and multi-group models disaggregated by gender. Results: The RI-CLPM provided a better fit than the CLPM. Both models showed the stability of QoL and loneliness. All autoregressive paths were significant, and a negative association between concurrent QoL and loneliness was observed across all waves. The CLPM supported a reciprocal relationship, while the RI-CLPM only confirmed the effects of loneliness on QoL. Women reported higher levels of loneliness and poorer QoL, but no gender differences were identified in the longitudinal association. Conclusions: Addressing loneliness in early stages could be a better preventive measure to promote quality of life in both genders.
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Solidão , Qualidade de Vida , Humanos , Solidão/psicologia , Qualidade de Vida/psicologia , Feminino , Masculino , Idoso , Estudos Longitudinais , Europa (Continente)/epidemiologia , Idoso de 80 Anos ou mais , Fatores Sexuais , Envelhecimento/psicologiaRESUMO
OBJECTIVE: The aim of the study was to determine the effect of WhatsApp-based BETTER sex counselling on sexual function and sexual quality of life in breast cancer survivors in a randomized control trial. METHODS: This is a randomized controlled trial in which a total of 90 breast cancer survivors were recruited using convenience sampling and then randomly assigned to two groups of WhatsApp-based BETTER model counselling and routine care. Data collection tools consisted of a demographic questionnaire, the Sexual Quality of Life-Female (SQOL-F) and the Sexual Function Index (FSFI-BC). Participants in the intervention group were given access to the 6-week program. The program consisted of six consultation and assignment packages covering all six steps of the BETTER model. Data were analyzed using SPSS software version 20. Chi-square test, independent samples t-test and repeated measures analysis of variance were used. The significance level (p-value) was considered to be less than 0.05. RESULTS: In the control group, the mean score of SQL scale changed from 35.16 ± 10.71 to 35.16 ± 12.97 (P > 0.05) and in the intervention group, it significantly increased from 34.76 ± 10.13 to 68.20 ± 20.48 (P < 0.001). Similarly, the comparison of mean of FSF in the control group showed a none-significant change from 58.13 ± 7.11 to 58.35 ± 6.11 (P > 0.05), and in the intervention group, it significantly improved from 59.49 ± 6.10 to 120.73 ± 25.54 (P < 0.001). The results of rANOVA indicated that there was a significant difference in the mean scores of the SQL and SFS between the two groups from pre- to post-intervention, and then over the 1-month follow-up period in the intervention group (p < 0.001). Considering partial eta squared, the effect of the intervention had the highest interaction effect on both variables of the sexual function index (η2 = 0.73) and sexual quality of life (η2 = 0.41). CONCLUSIONS: The intervention program was a successful model for improving female sexual quality of life and female sexual function in breast cancer survivors. TRIAL REGISTRATION: IRCT20210926052601N1, 7-11-2021.
Assuntos
Neoplasias da Mama , Sobreviventes de Câncer , Aplicativos Móveis , Qualidade de Vida , Aconselhamento Sexual , Humanos , Feminino , Qualidade de Vida/psicologia , Neoplasias da Mama/psicologia , Sobreviventes de Câncer/psicologia , Pessoa de Meia-Idade , Adulto , Aconselhamento Sexual/métodos , Comportamento Sexual/psicologia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Most individuals with severe mental illness (SMI) strongly prefer independent living over living in an institution. Independent Supported Housing (ISH) provides housing rehabilitation for persons with SMI in their accommodations. However, most individuals who need housing rehabilitation live in institutional housing settings (housing rehabilitation as usual: HAU). We investigated which housing rehabilitation setting is effective on which variable in the long term to support service users to form an informed preference for either housing rehabilitation setting. METHODS: We conducted a two-year longitudinal observational non-inferiority study to test the effectiveness of ISH in improving participants' social inclusion, quality of life, emotional social support, capabilities, symptom severity, functioning, service utilisation and costs. Participants were assessed at baseline and after six, twelve, and 24 months. Mixed effects models were computed to test between-group and within-group effects. RESULTS: The study included 83 participants in ISH (n = 31) and HAU (n = 52) housing rehabilitation settings with a mean age of 36.2 years. Most participants were male (64%) and had a primary psychotic or schizophrenic (35%) or an affective diagnosis (24%). During the study, ISH participants significantly improved their quality of life (ß = 0.54; 95% CI: 0.26 to 0.82), symptoms (ß = -0.32; 95% CI: -0.60 to -0.03), and capabilities (ß = 4.46; 95% CI: 0.14 to 8.77) and decreased psychiatric hospitalisations (p = 0.04). HAU participants improved their quality of life (ß = 0.40; 95% CI: 0.12 to 0.69). Housing and rehabilitation support costs were almost half with ISH than with HAU. CONCLUSION: ISH has been shown to be much less expensive than HAU and was associated with several improvements like reduced psychiatric hospitalisations and improved quality of life. Therefore, our findings strongly argue for a preference-driven provision of housing rehabilitation services and to end the institutionalisation of persons with SMI. TRIAL REGISTRATION: The study was registered on December 04, 2018, at ClinicalTrials.gov (NCT03815604).
Assuntos
Transtornos Mentais , Qualidade de Vida , Humanos , Masculino , Feminino , Estudos Longitudinais , Adulto , Qualidade de Vida/psicologia , Transtornos Mentais/reabilitação , Vida Independente , Pessoa de Meia-Idade , Habitação/economia , Apoio Social , Esquizofrenia/reabilitaçãoRESUMO
BACKGROUND: Living in a family with a history of problematic substance use or dementia is a major stressful experience for family members and results often in an impaired health condition. Seeking and receiving social support has been emphasized as a major resource while coping with this stress. However, especially family members of people with problematic substance use often refrain from help-seeking. This paper examines whether (1) family members of problematic substance users are more physically and psychologically distressed than caregivers of people with dementia, and (2) whether and to what extent differences are mediated by satisfaction with perceived professional and private social support. METHODS: Two samples of family members of people with a chronic disease (problematic substance use (n = 221), dementia (n = 322)) completed self-administered questionnaires on burden, quality of life and social support. Physical distress was assessed using the Giessen Subjective Complaints List, psychological distress using the Center for Epidemiological Studies Depression Scale and anxiety symptoms using the Hospital Anxiety and Depression Scale. Quality of life was measured using the WHOQOL-BREF, and satisfaction with professional and private social support was assessed using a visual analog scale. Multivariate analyses of variance were performed to compare the two groups on the means of (1) burden ratings and (2) QoL dimensions and followed up by discriminant analyses to explore meaningful variables according to group differences. Parallel mediation analyses were performed to test the mediators private and professional support. RESULTS: Family members of problematic substance users score higher on the burden indicators, while they score lower with regard to the quality of life dimensions than caregivers of people with dementia. The difference in burden is mainly explained by the higher scores for exhaustion, stomach discomfort and depression of family members of problematic substance users. Caregivers of people with dementia reported greater satisfaction with perceived social support, either private or professional. Satisfaction with private support was shown to be more important in mediating the impact of stress. CONCLUSIONS: Family members of people with problematic substance use are in great need of tailored support programs and should be explicitly targeted.
Assuntos
Cuidadores , Demência , Família , Satisfação Pessoal , Qualidade de Vida , Apoio Social , Transtornos Relacionados ao Uso de Substâncias , Humanos , Demência/psicologia , Masculino , Feminino , Pessoa de Meia-Idade , Cuidadores/psicologia , Qualidade de Vida/psicologia , Transtornos Relacionados ao Uso de Substâncias/psicologia , Transtornos Relacionados ao Uso de Substâncias/epidemiologia , Idoso , Família/psicologia , Adulto , Inquéritos e Questionários , Efeitos Psicossociais da Doença , Estresse Psicológico/psicologia , Idoso de 80 Anos ou maisRESUMO
INTRODUCTION: The number of older adults who are cancer survivors is rapidly growing. Evidence is needed to inform interventions to support successful aging among older adults (including older adult cancer survivors). Active engagement with life, that is, spending time with family and/or close friends, may be related to health outcomes, but this concept remains understudied. METHODS: We used survey data to assess active engagement among older adults (ages 50 + years) from seven mid-Atlantic US states (n = 2,914), and geocoded their residence to collect collected measures of community availability of social interaction. Outcomes were physical and mental health-related quality of life (HRQoL), assessed with the SF-12. We used multivariable, multilevel linear regression to evaluate relationships between social interactions (i.e., "active engagement with life," or visiting with family and/or friends at least once per week and having at least three close friends, and community-level availability, measured with census tract-level park land and walkability and with county-level availability of social associations) and HRQoL. Finally, we explored differences in these relationships by recent cancer survivorship. RESULTS: Overall, 1,518 (52.3%) participants were actively engaged. Active engagement was associated with higher physical HRQoL (estimate = 0.94, standard error [SE] = 0.46, p = .04) and mental HRQoL (estimate = 2.10, SE = 0.46, p < .001). The relationship between active engagement and physical HRQoL was stronger for recent cancer survivors (estimate = 4.95, SE = 1.84, p < .01) than for the general population (estimate = 1.10, SE = 0.43, p = .01). Community-level availability of social interaction was not associated with HRQoL. CONCLUSION: Our analysis demonstrated promising associations between active engagement with life and HRQoL among older adults, with large benefits for older cancer survivors. Additional research is needed on how active engagement is associated with better HRQoL, which can inform future policies and programs to optimize the aging process in the US.
Assuntos
Sobreviventes de Câncer , Neoplasias , Qualidade de Vida , Humanos , Masculino , Feminino , Idoso , Qualidade de Vida/psicologia , Pessoa de Meia-Idade , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Neoplasias/psicologia , Inquéritos e Questionários , Estados Unidos , Idoso de 80 Anos ou mais , Participação Social/psicologia , Interação Social , Nível de Saúde , Sobrevivência , Apoio SocialRESUMO
Importance: Type 1 diabetes (T1D) requires demanding self-management health behaviors, and adolescents with T1D are at risk for poor psychosocial and medical outcomes. Developing resilience skills may help adolescents with T1D and elevated distress navigate common stressors and achieve positive outcomes. Objective: To test the efficacy of the Promoting Resilience in Stress Management (PRISM) intervention on levels of hemoglobin A1c (HbA1c), diabetes distress, self-management behaviors, resilience, and quality of life among adolescents. Design, Setting, and Participants: This phase 3, parallel, 1:1 randomized clinical trial that followed up 172 participants for 12 months was conducted from January 1, 2020, to November 30, 2022, at each of 2 children's hospitals, in Seattle, Washington, and Houston, Texas. Participants were ages 13 to 18 years with T1D for at least 12 months and elevated diabetes distress. Intervention: PRISM, a manualized, skills-based, individual intervention program that teaches stress management, goal setting, reframing, and meaning-making, facilitated by a coach and accompanied by a digital app, was delivered in three 30- to 60-minute sessions approximately 2 weeks apart. Main Outcomes and Measures: The 2 primary outcomes, diabetes distress and HbA1c levels, and 3 secondary outcomes, resilience, quality of life, and engagement in self-management behaviors, were assessed at baseline and 6 and 12 months after baseline. Linear mixed-effects regression models were used to evaluate associations between PRISM or usual care (UC) and these outcomes at both time points for the intention-to-treat population. Results: Among 172 adolescents (mean [SD] age, 15.7 [1.6] years), 96 were female (56%), and their baseline mean (SD) HbA1c level was 8.7% (2.0%). No differences were evident between PRISM and UC recipients in HbA1c levels (ß, -0.21 [95% CI, -0.65 to 0.22]; P = .33) or diabetes distress (ß, -2.71 [95% CI, -6.31 to 0.90]; P = .14) or any participant-reported outcome (eg, ß, 2.25 [95% CI, -0.30 to 4.80]; P = .08 for self-management behaviors) at 6 months. At 12 months, there was no statistically significant difference between arms in HbA1c levels (ß, -0.26 [95% CI, -0.72 to 0.19]; P = .25); however, PRISM recipients reported significantly greater amelioration of diabetes distress (ß, -4.59 [95% CI, -8.25 to -0.94]; P = .01) and improvement in self-management behaviors (ß, 3.4 [95% CI, 0.9 to 5.9]; P = .01) compared with UC recipients. Conclusions and Relevance: The findings in this randomized clinical trial of psychosocial and behavioral improvements associated with PRISM at 12 months illustrate the value of a strengths-based intervention. Integrating resilience skills-building with traditional diabetes care may be a promising approach for improving outcomes among adolescents with T1D and elevated diabetes distress. Trial Registration: ClinicalTrials.gov number: NCT03847194.
Assuntos
Diabetes Mellitus Tipo 1 , Hemoglobinas Glicadas , Qualidade de Vida , Resiliência Psicológica , Autogestão , Estresse Psicológico , Humanos , Adolescente , Diabetes Mellitus Tipo 1/terapia , Diabetes Mellitus Tipo 1/psicologia , Diabetes Mellitus Tipo 1/sangue , Feminino , Masculino , Qualidade de Vida/psicologia , Estresse Psicológico/terapia , Autogestão/métodos , Autogestão/psicologia , Hemoglobinas Glicadas/análiseRESUMO
Home-dwelling people with dementia rely on their family members to be able to stay at home. This affects the family caregivers' quality of life (QoL). However, less is known about how male and female caregivers differ in their QoL. Our study aimed to investigate gender differences in caregivers' quality of life (QoL), whether emotional relationships influence QoL, and how their QoL changes over time. The study applied a cross-sectional and a longitudinal design to examine a total of 208 caregivers, 158 female and 50 male caregivers, and their family member with dementia. Regression analysis and t-tests were performed to identify what characteristics about caregivers and care receivers influence male and female QoL, and whether caregivers' QoL developed after one year. Both male and female caregivers' depression influenced their QoL. For females, their own social distress influenced their QoL, and for males, their experience of their care receivers' overemotional attitude influenced their QoL. From baseline to one-year follow-up their QoL decreased while their distress and experience of care receivers' emotional attitudes was stable. Significant gender-specific differences were found, indicating that gender must be considered when approving caregivers' needs and planning interventions for caregivers.