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1.
Epilepsia Open ; 2024 Jul 01.
Artigo em Inglês | MEDLINE | ID: mdl-38952082

RESUMO

The implementation and potential of ketogenic dietary therapies (KDTs) have changed over time. The organization of KDT services, the availability of multidisciplinary teams, resources and support for patients and families still vary widely around the world. This diversity is reflected by a lack of consistency in reported outcomes, optimization of using KDT and KDT compliance. To highlight the unmet needs for KDT services, the ERN EpiCARE Ketogenic Dietary Therapy Special Interest Group (KDT SIG) conducted an online survey on KDT implementation and utilization, addressing the following topics: Use and completeness of guidelines and protocols; assessment of compliance and outcome parameters, sustainability and inclusivity in daily life. Consistently reported unmet needs included the lack of psychological support and resources to measure and improve adherence to KDT, the lack of inclusion strategies, and shared guidelines and protocols adapting to specific needs. Future interventions should focus primarily on educational and informative measures together with creation of shared protocols for complex care. PLAIN LANGUAGE SUMMARY: This study provides the results of a survey compiled by clinicians and patients representatives belonging to ERN Epicare, designed to unravel unmet needs from both patients' and healthcare practitioners' perspectives during ketogenic dietary therapies (KDT) provision. Importantly, results show the need to create new shared protocols and guidelines meant for KDT use in complex care situations and to develop future strategies initiatives to support patients improving their social inclusivity.

2.
Open Forum Infect Dis ; 11(7): ofae284, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38966849

RESUMO

Background: Unmet needs for ancillary services are substantial among people with human immunodeficiency virus (PWH), and provider type could influence the prevalence of unmet needs for these services. Methods: Data from a national probability sample of PWH were analyzed from the Centers for Disease Control and Prevention's Medical Monitoring Project. We analyzed 2019 data on people who had ≥1 encounter with a human immunodeficiency virus (HIV) care provider (N = 3413) and their care facilities. We assessed the proportion of needs that were unmet for individual ancillary services, overall and by HIV care provider type, including infectious disease (ID) physicians, non-ID physicians, nurse practitioners, and physician assistants. We calculated prevalence differences (PDs) with predicted marginal means to assess differences between groups. Results: An estimated 98.2% of patients reported ≥1 need for an ancillary service, and of those 46% had ≥1 unmet need. Compared with patients of ID physicians, needs for many ancillary services were higher among patients of other provider types. However, even after adjustment, patients of non-ID physicians had lower unmet needs for dental care (adjusted PD, -5.6 [95% confidence interval {CI}, -9.9 to -1.3]), and patients of nurse practitioners had lower unmet needs for HIV case management services (adjusted PD, -5.4 [95% CI, -9.4 to -1.4]), compared with patients of ID physicians. Conclusions: Although needs were greater among patients of providers other than ID physicians, many of these needs may be met by existing support systems at HIV care facilities. However, additional resources may be needed to address unmet needs for dental care and HIV case management among patients of ID physicians.

3.
Childs Nerv Syst ; 2024 Jul 09.
Artigo em Inglês | MEDLINE | ID: mdl-38981902

RESUMO

BACKGROUND: Raising a child with hydrocephalus can be very challenging, especially in low- and middle-income countries. In Pakistan, mothers being the primary caregivers for their hydrocephalic children are under tremendous stress. METHODS: This study explores the challenges faced by Pakistani mothers raising children with hydrocephalus, employing a qualitative methodology through focus group discussions comprising ten mothers of hydrocephalic babies at Tertiary Care Hospital in Pakistan. RESULTS: The findings highlight three main themes: emotional toll, social isolation, and financial strain. Mothers experience significant emotional stress due to societal stigma and a lack of support, particularly from their husbands and family. Social isolation is prevalent, as mothers fear sharing their burdens and face physical confinement due to their children's needs. Financial strain is another major issue, with high medical costs adding to their economic difficulties. CONCLUSION: The study emphasizes improved access to specialized care, awareness campaigns to reduce stigma, financial assistance, and stronger community support networks to support these mothers better. Addressing these unmet needs is crucial for empowering Pakistani mothers in their caregiving roles and improving the quality of life for their children with hydrocephalus.

4.
J Women Aging ; : 1-16, 2024 Jul 08.
Artigo em Inglês | MEDLINE | ID: mdl-38976516

RESUMO

Aging Veterans face complex needs across multiple domains. However, the needs of older female Veterans and the degree to which unmet needs differ by sex are unknown. We analyzed responses to the HERO CARE survey from 7,955 Veterans aged 55 years and older (weighted N = 490,148), 93.9% males and 6.1% females. We evaluated needs and unmet needs across the following domains: activities of daily living (ADLs), instrumental ADLs (IADLs), health management, and social. We calculated weighted estimates and compared sex differences using age-adjusted prevalence ratios. On average, female Veterans were younger, more were Non-Hispanic Black and unmarried. Females and males reported a similar prevalence of problems across all domains. However, compared to males, female Veterans had a lesser prevalence of missed appointments due to transportation (aPR 0.49; 95% CI: 0.26-0.92), housework unmet needs (aPR: 0.44; 95% CI: 0.20-0.97), and medication management unmet needs (aPR: 0.33; 95% CI: 0.11-0.95) but a higher prevalence of healthcare communication unmet needs (aPR: 2.40; 95% CI: 1.13-5.05) and monitoring health conditions unmet needs (aPR: 2.13, 95% CI: 1.08-4.20). Female Veterans' common experience of unmet needs in communicating with their healthcare teams could result in care that is less aligned with their preferences or needs. As the number of older female Veterans grows, these data and additional work to understand sex-specific unmet needs and ways to address them are essential to providing high-quality care for female Veterans.

5.
Respir Investig ; 62(5): 785-793, 2024 Jul 11.
Artigo em Inglês | MEDLINE | ID: mdl-38996779

RESUMO

Idiopathic pulmonary fibrosis (IPF) is the archetypal interstitial lung disease. It is a chronic progressive condition that is challenging to manage as the clinical course of the disease is often difficult to predict. The prevalence of IPF is rising globally and in Japan, where it is estimated to affect 27 individuals per 100,000 of the population. Greater patient numbers and the poor prognosis associated with IPF diagnosis mean that there is a growing need for disease management approaches that can slow or even reverse disease progression and improve survival. Considerable progress has been made in recent years, with the approval of two antifibrotic therapies for IPF (pirfenidone and nintedanib), the availability of Japanese treatment guidelines, and the creation of global and Japanese disease registries. Despite this, significant unmet needs remain with respect to the diagnosis, treatment, and management of this complex disease. Each of these challenges will be discussed in this review, including making a timely and differential diagnosis of IPF, uptake and adherence to antifibrotic therapy, patient access to pulmonary rehabilitation, lung transplantation and palliative care, and optimal strategies for monitoring and staging disease progression, with a particular focus on the status in Japan. In addition, the review will reflect upon how ongoing research, clinical trials of novel therapies, and technologic advancements (including artificial intelligence, biomarkers, and genomic classification) may help address these challenges in the future.

7.
Cureus ; 16(6): e62525, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-39022509

RESUMO

BACKGROUNDS: Enhancing maternal health quality is a concern among researchers globally. According to the World Health Organization (WHO), one factor in women's health and empowerment is the rate of use of various contraceptive techniques. The WHO defines unmet contraceptive need as the discrepancy between a woman's desire to delay or cease childbearing and lack of contraception use to achieve this goal. Our study was designed to measure the unmet need for family planning and contraceptive use among married Saudi women attending primary healthcare centers in Alahsa, Saudi Arabia. METHODOLOGY: A cross-sectional study was carried out using multistage cluster stratified sampling. The study included all married Saudi women aged 18-49 attending primary health centers. A structured questionnaire from the United States Agency for International Development Demographic and Health Surveys Methodology was used. Data analysis was performed using the statistical software IBM SPSS version 29 (IBM Corp., Armonk, NY). RESULTS: In all, 430 individuals were included. The participants' ages ranged from 19 to 49 years (33.4 ± 7 years). Among them, 50 (11.6%) were pregnant. Among those who were not pregnant, 268 (62.3%) were using a method of contraception. Based on the definitions adopted in this study, 90 (20.9%) had unmet needs for family planning, and 340 (79.1%) had their needs met. The total demand for family planning was estimated to be 83.2%. The percentage of demand for family planning satisfied by a modern contraceptive method was 46.9%. CONCLUSION: Although Alahsa has a lower unmet need rate (20%) than other cities in Saudi Arabia, it remains notably higher than the average rate in Northern African and Western Asian countries, which is 10.9%. A number of factors, including nulliparity and having more than two children, were associated with unmet contraceptive needs. The majority of women who did not use contraceptives had concerns about the side effects and inconvenience of use.

8.
Artigo em Inglês | MEDLINE | ID: mdl-39031954

RESUMO

BACKGROUND: Colorectal cancer (CRC) has emerged as one of the most common cancers, with increasing survival rates globally. As patients with CRC experience diverse treatment effects corresponding to different survival stages, understanding their unmet needs based on the survival stage is critical to tailor supportive care with limited medical resources. AIM: This study aimed to understand the unmet needs of patients with CRC across survival stages. METHODS: This scoping review followed the 5-stage framework established by Arksey and O'Malley. Five online databases were searched with narrative synthesis performed after data extraction. RESULTS: Fifteen studies were identified for this review, with 12 focusing on the acute survival stage and three reporting on the extended survival stage. Ten studies used validated scales to assess unmet needs, with the Supportive Care Needs Survey being the most common scale. Unmet needs in patients with CRC demonstrate distinct patterns across survival stages. Most studies reported a higher prevalence of unmet needs during the extended survival stage compared to the acute survival stage. Unmet emotional needs predominate during the acute survival stage, whereas unmet physical needs become most prominent in the extended survival stage. LINKING EVIDENCE TO ACTION: Healthcare providers are encouraged to conduct assessments tailored to the specific survival stage, with particular emphasis on addressing unmet needs during the extended survival stage. The development of standardized scales is recommended to comprehensively assess the unmet needs of patients with CRC.

9.
Arerugi ; 73(5): 399-405, 2024.
Artigo em Japonês | MEDLINE | ID: mdl-39010199

RESUMO

BACKGROUND: The number of students with food allergies is on the increase, while the problems and burdens of school teachers and staff are not yet clear. Our study was designed to identify the unmet needs of school teachers and staff dealing with food allergy in school lunches. METHODS: A written questionnaire was sent by mail to 600 elementary and junior high schools in Miyagi Prefecture. RESULTS: Responses were received from 169 schools. The prevalence of food allergy was 5.6% and the EpiPen possession rate was 0.36%. The most common problems perceived by teachers and staff were the "increase in the number of students with food allergies" and the "diversification of causative foods". Other problems included "uncertainty of foods to be removed" and "insufficient collaboration among teachers, guardians, and doctors," which could be improved by the medical providers. In the free descriptions, many respondents complained of an excessive workload and the mental burden of never making a mistake or missing anything. CONCLUSION: Our survey revealed that while there is a public demand for safe school lunches, the teachers and staff dealing with this demand are under considerable strain. It is necessary to consider reducing the burden, and a sustainable system needs to be established.


Assuntos
Hipersensibilidade Alimentar , Professores Escolares , Hipersensibilidade Alimentar/epidemiologia , Humanos , Japão/epidemiologia , Inquéritos e Questionários , Instituições Acadêmicas , Criança , Serviços de Alimentação , Adolescente
10.
Epilepsia Open ; 2024 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-38965814

RESUMO

OBJECTIVE: Epilepsy requires continuous medical attention from multiple healthcare specialists, specialized facilities, and community-based care. In Spain, there is no standardized approach to epilepsy care. The aim of this study was to identify the factors impacting on the delivery of high-quality care by exploring key steps and barriers along the patient journey through the Spanish National Healthcare System (NHS). METHODS: A qualitative study was conducted using opinions and experiences of neurologists, nurses, patients, and caregivers shared in discussion meetings. Using thematic content analyses, relevant aim-focused statements were coded according to prespecified issues in a discussion map (i.e., key steps and barriers), and sub-coded according to emerging issues. Thematic saturation and co-occurrence of key steps/barriers were evaluated to identify the most relevant factors impacting on the delivery of high-quality care. RESULTS: Sixty-five stakeholders took part in discussion meetings (36 neurologists, 10 nurses, 10 patients, and nine caregivers). Six key steps on the patient journey were identified: emergency care, diagnosis, drug therapy, follow-up, referral, and interventional treatment. Of these, follow-up was the most relevant step impacting on the delivery of high-quality patient care, followed by drug therapy and diagnosis. Emergency care was considered a hot-spot step with impact throughout the patient journey. Communication (among HCPs and between HCPs and patients) was a barrier to the delivery of high-quality care at several stages of the patient journey, including drug therapy, follow-up, referral, and interventional treatment. Resource availability was a barrier for diagnosis (especially for confirmation), drug therapy (drug availability), and referral (lack of professionals and specialized centers, and long waiting lists). SIGNIFICANCE: This is the first study capturing perspectives of four key stakeholders involved in epilepsy care in Spain. We provide an overview of the patient journey through the Spanish NHS and highlight opportunities to improve the delivery of patient-centered care with a chronicity perspective. PLAIN LANGUAGE SUMMARY: Patients with epilepsy may require prolonged medical care. In Spain, care is provided by a range of specialist and non-specialist centers. In this study, a team of Spanish neurologists, nurses, patients and caregivers identified barriers that affect the delivery of high-quality care for patients with epilepsy at each stage of their journey through the Spanish NHS. Specific epilepsy training for healthcare providers, appropriate resources for diagnosing and treating patients, and good communication between healthcare workers and patients were identified as important factors in providing high-quality care for patients with epilepsy.

11.
Gynecol Endocrinol ; 40(1): 2362244, 2024 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-38946226

RESUMO

Ovulatory disorders are a common cause of abnormal uterine bleeding in women of reproductive age. The International Federation of Gynecology and Obstetrics currently offers a causal classification system for ovulatory disorders but does not provide clear management recommendations. There remains regional disparity in treatment practices, often influenced by institutional and insurance regulations as well as cultural and religious practices. A panel of experts evaluated current gaps in ovulatory disorder management guidelines and discussed potential strategies for addressing these unmet needs. Key gaps included a lack in consensus about the effectiveness of combined estrogen and progestogen versus progestogen alone, a paucity of evidence regarding the relative effectiveness of distinct hormonal molecules, a lack of data regarding optimal treatment duration, and limited guidance on optimal sequencing of treatment. Recommendations included development of a sequential treatment-line approach and development of a clinical guide addressing treatment scenarios common to all countries, which can then be adapted to local practices. It was also agreed that current guidelines do not address the unique clinical challenges of certain patient groups. The panel discussed how the complexity and variety of patient groups made the development of one single disease management algorithm unlikely; however, a simplified, decision-point hierarchy could potentially help direct therapeutic choices. Overall, the panel highlighted that greater advocacy for a tailored approach to the treatment of ovulatory disorders, including wider consideration of non-estrogen therapies, could help to improve care for people living with abnormal uterine bleeding due to ovarian dysfunction.


Assuntos
Hemorragia Uterina , Humanos , Feminino , Hemorragia Uterina/terapia , Hemorragia Uterina/etiologia , Hemorragia Uterina/diagnóstico , Ovulação , Guias de Prática Clínica como Assunto , Metrorragia/etiologia , Metrorragia/terapia
12.
JMIR Public Health Surveill ; 10: e56881, 2024 Jul 11.
Artigo em Inglês | MEDLINE | ID: mdl-39037327

RESUMO

Background: Unmet need for health care is defined as choosing to postpone or completely avoid necessary medical treatment despite having a need for it, which can worsen current conditions or contribute to new health problems. The emerging infodemic can be a barrier that prevents people from accessing quality health information, contributing to lower levels of seeking medical care when needed. Objective: We evaluated the association between perceptions of health mis- and disinformation on social media and unmet need for health care. In addition, we evaluated mechanisms for this relationship, including frequency of social media use, medical trust, and medical care discrimination. Methods: Data from 3964 active adult social media users responding to the 2022 Health Information National Trends Survey 6 (HINTS 6), a nationally representative survey, were analyzed. The outcome was unmet need for medical care, defined as delaying or not getting the necessary medical care. The predictor variables were perception of social media health mis- and disinformation, frequency of social media use, level of trust in the health care system, and perceived racial and ethnic discrimination when receiving health care. Results: Multivariable logistic regression models indicated that perception of substantial social media health mis- and disinformation (odds ratio [OR] 1.40, 95% CI 1.07-1.82), daily use of social media (OR 1.34, 95% CI 1.01-1.79), low medical trust (OR 1.46, 95% CI 1.06-2.01), and perceived discrimination (OR 2.24, 95% CI 1.44-3.50) were significantly associated with a higher likelihood of unmet need for medical care. Unmet need among adults who did not use social media daily and who did not perceive substantial mis- and disinformation (24%; 95% CI 19%-30%) was lower compared to daily social media users who perceived substantial mis- and disinformation (38%; 95% CI 32%-43%). Adults who perceived substantial mis- and disinformation and had low trust in health care had the highest probability of reporting unmet need (43%; 95% CI 38%-49%) compared to the other three groups. Adults who perceived substantial mis- and disinformation and experienced medical care discrimination had a statistically significant higher probability of reporting unmet need (51%; 95% CI 40%-62%) compared to adults who did not experience medical care discrimination and did not perceive substantial mis- and disinformation (29%; 95% CI 26%-32%). Conclusions: Unmet need for medical care was higher among individuals who perceived a substantial degree of social media mis- and disinformation, especially among those who used social media daily, did not trust the health care system, and experienced racial or ethnic discrimination when receiving health care. To counter the negative effects of social media mis- and disinformation on unmet need for health care, public health messaging must focus on daily social media users as well as improving trust and reducing structural racism in the health care system.


Assuntos
Mídias Sociais , Confiança , Humanos , Mídias Sociais/estatística & dados numéricos , Estudos Transversais , Masculino , Confiança/psicologia , Adulto , Feminino , Pessoa de Meia-Idade , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Adolescente , Idoso , Estados Unidos
13.
Urol Clin North Am ; 51(3): 327-334, 2024 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-38925735

RESUMO

Penile cancer is a rare cancer, where patients not only need to deal with the anxiety around a cancer diagnosis, but also manage the consequences of treatment on their self-esteem, body image, and intimate relationships. Many find it embarrassing and difficult to talk to family and friends. Due to this, changes in urination and other physical effects of treatment, many will withdraw from social activities too. Patients need psychosocial support and more needs to be done to address this unmet need. Holistic and multidisciplinary approaches in clinic, with access to counseling, may help patients adjust to their new situation.


Assuntos
Neoplasias Penianas , Sistemas de Apoio Psicossocial , Humanos , Masculino , Comunicação , Neoplasias Penianas/complicações , Neoplasias Penianas/psicologia , Neoplasias Penianas/terapia , Interação Social , Cônjuges/psicologia , Suicídio/psicologia , Recidiva , Aconselhamento
14.
J Gen Intern Med ; 2024 Jun 28.
Artigo em Inglês | MEDLINE | ID: mdl-38941058

RESUMO

BACKGROUND: Medication adherence is essential for the achievement of therapeutic goals. Yet, the World Health Organization estimates that 50% of patients are nonadherent to medication and this has been associated with 125 billion euros and 200,000 deaths in Europe annually. OBJECTIVE: This study aimed to unravel barriers and unmet training needs regarding medication adherence management across Europe. DESIGN: A cross-sectional study was conducted through an online survey. The final survey contained 19 close-ended questions. PARTICIPANTS: The survey content was informed by 140 global medication adherence experts from clinical, academic, governmental, and patient associations. The final survey targeted healthcare professionals (HCPs) across 39 European countries. MAIN MEASURES: Our measures were barriers and unmet training needs for the management of medication adherence across Europe. KEY RESULTS: In total, 2875 HCPs (pharmacists, 40%; physicians, 37%; nurses, 17%) from 37 countries participated. The largest barriers to adequate medication adherence management were lack of patient awareness (66%), lack of HCP time (44%), lack of electronic solutions (e.g., access to integrated databases and uniformity of data available) (42%), and lack of collaboration and communication between HCPs (41%). Almost all HCPs pointed out the need for educational training on medication adherence management. CONCLUSIONS: These findings highlight the importance of addressing medication adherence barriers at different levels, from patient awareness to health system technology and to fostering collaboration between HCPs. To optimize patient and economic outcomes from prescribed medication, prerequisites include adequate HCP training as well as further development of digital solutions and shared health data infrastructures across Europe.

15.
Orphanet J Rare Dis ; 19(1): 239, 2024 Jun 18.
Artigo em Inglês | MEDLINE | ID: mdl-38890698

RESUMO

BACKGROUND: Osteogenesis imperfecta (OI) is a rare disease characterized by low bone mass and bone fragility, associated with an increased risk of fractures, and skeletal and extra-skeletal symptoms that results in an impairment of health-related quality of life of OI patients. Since published studies on OI in Spain are limited, this study aimed to determine the epidemiology, assessed the disease burden, management and unmet needs of OI patients in Spain. Thirty-four experts in the management of patients with osteogenesis imperfecta completed two rounds of online consultation and reported real-life experience and data from Spanish hospitals. Delphi study questionnaires were based on literature review. A working group of nationally recognized clinical experts supported the development of the study questionnaires and the final validation of results. RESULTS: The estimated prevalence of patients diagnosed with OI in Spain is 0.56:10,000 inhabitants (95%CI: 0.54-0.59), which represents that, approximately, 2,669 OI patients are currently managed in Spanish hospitals. It is estimated that approximately 269 new patients would be diagnosed with OI each year in Spain, representing an estimated incidence of 0.06 (95%CI: 0.05-0.06) per 10,000 inhabitants per year. Clinical management of OI in Spain is performed by a range of medical specialists; however, multidisciplinary care is not fully implemented. The absence of an approved curative treatment or a treatment to reduce the clinical features of the disease remains the main unmet need. CONCLUSIONS: This study provides a snapshot of the current situation of patients with OI in Spain reported by clinical experts. The results provide an estimation of the epidemiology of the disease, and complement the available evidence on disease burden, clinical management, and unmet needs of these patients in Spain.


Assuntos
Técnica Delphi , Osteogênese Imperfeita , Osteogênese Imperfeita/epidemiologia , Humanos , Espanha/epidemiologia , Inquéritos e Questionários , Qualidade de Vida , Feminino , Masculino , Prevalência
16.
Harm Reduct J ; 21(1): 119, 2024 Jun 19.
Artigo em Inglês | MEDLINE | ID: mdl-38890736

RESUMO

BACKGROUND: The current fourth wave of the United States opioid overdose epidemic is characterized by the co-use of opioids and stimulants, including illicit opioids and methamphetamine. The co-use of these two drugs, known as "goofballing," is associated with higher risk for several adverse outcomes, including more frequent injections, greater health risks, and higher morbidity. Considering these differences, this unique subpopulation of people who inject drugs (PWID) may also have unique unmet needs and harm reduction preferences. METHODS: We collected self-reported data from participants (N = 50) of a syringe services program (SSP), including basic needs and harm reduction preferences. Using bivariate analyses, we examined differences between SSP participants who do and do not co-use illicit opioids and methamphetamine. Co-use was defined as reporting the use of both drugs, which may or may not have been used simultaneously. RESULTS: In the overall sample, the mean level of need was highest for bus passes or other transportation, a person who can help you get the services you need, medication for opioid use disorder, and a job or job training. Additionally, all participants reported being either interested or very interested in fentanyl test strips, safe consumption sites, delivery of syringe service supplies, and delivery of naloxone. Those who endorsed co-use had a greater need for food, healthcare, substance use disorder treatment, a support person to help them access needed services, and bus passes or transportation. CONCLUSIONS: Unmet needs were prevalent, and the desire for more harm reduction services was high among these PWID. Results also suggest people who co-use illicit opioids and methamphetamine may have the greatest unmet needs and desire for additional harm reduction services.


Assuntos
Redução do Dano , Metanfetamina , Programas de Troca de Agulhas , Transtornos Relacionados ao Uso de Opioides , Abuso de Substâncias por Via Intravenosa , Humanos , Programas de Troca de Agulhas/estatística & dados numéricos , Feminino , Masculino , Adulto , Abuso de Substâncias por Via Intravenosa/epidemiologia , Transtornos Relacionados ao Uso de Opioides/epidemiologia , Preferência do Paciente , Pessoa de Meia-Idade , Transtornos Relacionados ao Uso de Anfetaminas/epidemiologia , Necessidades e Demandas de Serviços de Saúde/estatística & dados numéricos , Drogas Ilícitas , Analgésicos Opioides/uso terapêutico
17.
BMC Palliat Care ; 23(1): 157, 2024 Jun 21.
Artigo em Inglês | MEDLINE | ID: mdl-38907206

RESUMO

BACKGROUND: Cancer is a disease that transcends what is purely medical, profoundly affecting the day-to-day life of both patients and family members. Previous research has shown that the consequences of cancer are greatly aggravated in patients at the end of life, at a time when they must also grapple with numerous unmet needs. The main objective of this study was to obtain more in-depth insight into these needs, primarily in patients with end-stage cancer nearing death. METHODS: Semi-structured interviews were conducted in Spain with cancer patients at the end of life (n = 3) and their family members (n = 12). The findings from the interviews were analyzed using qualitative thematic analysis and a grounded theory approach. RESULTS: Four major themes emerged from the interviews that explored the needs and concerns of patients with cancer at the end of life: (1) physical well-being (2) emotional well-being (3) social well-being and (4), needs relating to information and autonomous decision-making. The interviews also shed light on the specific needs of family members during this period, namely the difficulties of managing increased caregiver burden and maintaining a healthy work-life balance. CONCLUSIONS: A lack of support, information and transparency during a period of immense vulnerability makes the end-of-life experience even more difficult for patients with cancer. Our findings highlight the importance of developing a more in-depth understanding of the needs of this population, so that informed efforts can be made to improve palliative healthcare and implement more comprehensive care and support at the end of life.


Assuntos
Família , Neoplasias , Pesquisa Qualitativa , Assistência Terminal , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Neoplasias/complicações , Masculino , Feminino , Assistência Terminal/psicologia , Assistência Terminal/métodos , Assistência Terminal/normas , Pessoa de Meia-Idade , Idoso , Família/psicologia , Espanha , Adulto , Teoria Fundamentada , Entrevistas como Assunto/métodos , Cuidadores/psicologia , Idoso de 80 Anos ou mais , Avaliação das Necessidades
18.
J Dermatolog Treat ; 35(1): 2351487, 2024 Jun 13.
Artigo em Inglês | MEDLINE | ID: mdl-38945542

RESUMO

PURPOSE: Pruritus is an unpleasant sensation that creates the urge to scratch. In many chronic conditions, relentless pruritus and scratching perpetuates a vicious itch-scratch cycle. Uncontrolled itch can detrimentally affect quality of life and may lead to sleep disturbance, impaired concentration, financial burden, and psychological suffering. Recent strides have been made to develop guidelines and investigate new therapies to treat some of the most common severely pruritic conditions, however, a large group of diseases remains underrecognized and undertreated. The purpose of this article is to provide a comprehensive review of the challenges hindering the treatment of pruritus. METHODS: An online search was performed using PubMed, Web of Science, Google Scholar, and ClinicalTrials.gov from 1994 to 2024. Included studies were summarized and assessed for quality and relevance in treating pruritus. RESULTS: Several barriers to treating pruritus emerged, including variable presentation, objective measurement of itch, and identifying therapeutic targets. Itch associated with autoimmune conditions, connective tissue diseases, genodermatoses, cutaneous T-cell lymphoma, and pruritus of unknown origin were among the etiologies with the greatest unmet needs. CONCLUSION: Treating pruritus poses many challenges and there are many itchy conditions that have no yet been addressed. There is an urgent need for large-scale controlled studies to investigate potential targets for these conditions and novel therapies.


Assuntos
Prurido , Humanos , Prurido/terapia , Prurido/etiologia , Prurido/diagnóstico , Eczema/terapia , Eczema/complicações , Qualidade de Vida , Doença Crônica
19.
J Alzheimers Dis ; 100(1): 345-356, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38875036

RESUMO

Background: Determining unmet need patterns and associated factors in primary care can potentially specify assessment batteries and tailor interventions in dementia more efficiently. Objective: To identify latent unmet healthcare need patterns and associated sociodemographic and clinical factors. Methods: This Latent Class Analysis (LCA) includes n = 417 community-dwelling people living with dementia. Subjects completed a comprehensive, computer-assisted face-to-face interview to identify unmet needs. One-hundred-fifteen predefined unmet medical, medication, nursing, psychosocial, and social care needs were available. LCA and multivariate logistic regressions were performed to identify unmet needs patterns and patient characteristics belonging to a specific pattern, respectively. Results: Four profiles were identified: [1] "few needs without any psychosocial need" (n = 44 (11%); mean: 7.4 needs), [2] "some medical and nursing care needs only" (n = 135 (32%); 9.7 needs), [3] "some needs in all areas" (n = 139 (33%); 14.3 needs), and [4] "many medical and nursing needs" (n = 99 (24%); 19.1 needs). Whereas the first class with the lowest number of needs comprised younger, less cognitively impaired patients without depressive symptoms, the fourth class had the highest number of unmet needs, containing patients with lower health status, less social support and higher comorbidity and depressive symptoms. Better access to social care services and higher social support reduced unmet needs, distinguishing the second from the third class (9.7 versus 14.3 needs). Conclusions: Access to the social care system, social support and depressive symptoms should be assessed, and the patient's health status and comorbidities monitored to more comprehensively identify unmet needs patterns and more efficiently guide tailored interventions.


Assuntos
Demência , Necessidades e Demandas de Serviços de Saúde , Avaliação das Necessidades , Humanos , Masculino , Feminino , Demência/terapia , Demência/epidemiologia , Idoso , Idoso de 80 Anos ou mais , Análise de Classes Latentes , Vida Independente , Pessoa de Meia-Idade
20.
J Aging Health ; : 8982643241263132, 2024 Jun 24.
Artigo em Inglês | MEDLINE | ID: mdl-38914050

RESUMO

OBJECTIVES: This study aims to identify the relationship between psychosocial factors and unmet needs among community-dwelling older adults who have received or who expect to receive formal home-based aged care services. METHODS: A subsample of the national Survey of Disability, Ageing and Carers was used to examine the prevalence of having any unmet needs among older adults navigating care. We also examined associations between older adults' psychosocial factors and their unmet needs using logistic regression. RESULTS: Regression analyses highlighted that perceived social isolation (OR = 1.62, 95% CI: 1.30-2.01), high/very high psychological distress (OR = 2.11, 95% CI: 1.52-2.93), and occasional assistance from informal support (OR = 1.92, 95% CI: 1.22-3.05) were associated with increased odds of having unmet needs, after adjusting for other covariates. DISCUSSION: Our study suggests that older adults facing psychosocial difficulties or lacking informal support are more likely to encounter barriers in accessing formal care. Future policy should address the psychosocial needs and support networks of older adults.

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