Reply to: "Comment on "Quality of life and unmet needs in patients with chronic liver disease: A mixed-method systematic review"".
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ABSTRACT:
SUBMITTER: Gronkjær LL
PROVIDER: S-EPMC8693004 | biostudies-literature | 2022 Feb
REPOSITORIES: biostudies-literature
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Reply to: "Comment on "Quality of life and unmet needs in patients with chronic liver disease: A mixed-method systematic review"".
Grønkjær Lea Ladegaard LL Lauridsen Mette Munk MM
JHEP reports : innovation in hepatology 20211129 2
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Project description: Not available
| S-EPMC8693009 | biostudies-literature
Project description:Background & aimsIn an attempt to uncover unmet patient needs, this review aims to synthesise quantitative and qualitative studies on patients' quality of life and their experience of having liver disease.MethodsThree databases (CINAHL, Embase, and PubMed) were searched from January 2000 to October 2020. The methodological quality and data extraction of both quantitative and qualitative studies were screened and appraised using Joanna Briggs Institute instruments for mixed-method systematic reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A convergent, integrated approach to synthesis and integration was used. Studies including patients with autoimmune and cholestatic liver disease, chronic hepatitis B and C, non-alcoholic fatty liver disease and non-alcoholic steatohepatitis, cirrhosis, and hepatocellular carcinoma were considered.ResultsThe searches produced 5,601 articles, of which 95 (79 quantitative and 16 qualitative) were included in the review. These represented studies from 26 countries and a sample of 37,283 patients. The studies showed that patients´ quality of life was reduced. Unmet needs for information and support and perceived stigmatisation severely affected patients' quality of life.ConclusionsOur study suggests changes to improve quality of life. According to patients, this could be achieved by providing better education and information, being aware of patients' need for support, and raising awareness of liver disease among the general population to reduce misconceptions and stigmatisation.Registration numberPROSPERO CRD42020173501.Lay summaryRegardless of aetiology, patients with liver diseases have impaired quality of life. This is associated with disease progression, the presence of symptoms, treatment response, and mental, physical, and social factors such as anxiety, confusion, comorbidities, and fatigue, as well as limitations in daily living, including loneliness, low income, stigmatisation, and treatment costs. Patients highlighted the need for information to understand and manage liver disease, and awareness and support from healthcare professionals to better cope with the disease. In addition, there is a need to raise awareness of liver diseases in the general population to reduce negative preconceptions and stigmatisation.
| S-EPMC8585663 | biostudies-literature
Project description:Concerted research efforts over the last three decades have resulted in improved survival and outcomes for patients diagnosed with nasopharyngeal carcinoma (NPC). The evolution of radiotherapy techniques has facilitated improved dose delivery to target volumes while reducing dose to the surrounding normal tissue, improving both disease control and quality of life (QoL). In parallel, clinical trials focusing on determining the optimal systemic therapy to use in conjunction with radiotherapy have been largely successful, resulting in improved locoregional, and distant control. As a consequence, neoadjuvant chemotherapy (NACT) prior to definitive chemoradiotherapy has recently emerged as the preferred standard for patients with locally advanced NPC. Two of the major challenges in interpreting toxicity and QoL data from the published literature have been the reliance on: (1) clinician rather than patient reported outcomes; and (2) reporting statistical rather than clinical meaningful differences in measures. Despite the lower rates of toxicity that have been achieved with highly conformal radiotherapy techniques, survivors remain at moderate risk of persistent and long-lasting treatment effects, and the development of late radiation toxicities such as hearing loss, cranial neuropathies and cognitive impairment many years after successful treatment can herald a significant decline in QoL. Future approaches to reduce long-term toxicity will rely on: (1) identifying individual patients most likely to benefit from NACT; (2) development of response-adapted radiation strategies following NACT; and (3) anticipated further dose reductions to organs at risk with proton and particle therapy. With increasing numbers of survivors, many in the prime of their adult life, research to identify, and strategies to address the unmet needs of NPC survivors are required. This contemporary review will summarize our current knowledge of long-term toxicity, QoL and unmet needs of this survivorship group.
| S-EPMC7303258 | biostudies-literature
Project description:BackgroundPatients with Fabry disease (FD) consider their quality of life to be significantly affected. The majority of studies evaluate the quality of life using quantitative measures and standardised scales that offer relevant information about experience with the disease in multiple aspects. The main objective of the research was to examine in depth the quality of life and unmet needs of patients diagnosed with FD in relation to their disease and treatment. A qualitative and transversal study was carried out in two stages: (a) nine semi-structured qualitative interviews with patients and one representative of the patient association, conducted individually by phone; (b) a focus group was set up with three patients diagnosed with FD and one relative. A deductive, thematic analysis approach was used for data coding and analysis.ResultsThe analysis of the interviews revealed various relevant themes: experience with the disease, impact on daily activities, experience of the family and work environment, experience related to treatment and healthcare professionals, and unmet support needs. Diagnosis has a significant impact on both those suffering from the disease and on the family environment. The symptoms and evolution of the disease are highly variable among the patients interviewed and depend on the years diagnosed as well as the time taken to receive the diagnosis. The families of the interviewees have to go through an adjustment process in light of the significant psychological impact brought about by the disease. Patients show various unmet needs. The need mentioned most is to have more information, support, and understanding from people around them and society, improving empathy and raising awareness about the difficulties faced by people with FD while giving the disease visibility. A lack of social understanding is highlighted as one of the main challenges, as this does not only affect the emotional management of the disease but also has repercussions on working life and social relationships.ConclusionsIt seems necessary to define possible strategies that help to improve the quality of life of patients and their experience with the disease. Some recommendations obtained from the study include: facilitate access to mental health professionals for patients and their families; improve training for specialists and coordination among them; and carry out actions to raise awareness of the disease that are aimed at the general public, the patients themselves, and the people around them.
| S-EPMC11490088 | biostudies-literature
Project description:This study aimed to identify and compare major areas of met and unmet needs reported by 455 homeless or recently housed individuals recruited from emergency shelters, temporary housing, and permanent housing in Quebec (Canada). Mixed methods, guided by the Maslow framework, were used. Basic needs were the strongest needs category identified, followed by health and social services (an emergent category), and safety; very few participants expressed needs in the higher-order categories of love and belonging, self-esteem, and self-actualization. The only significant differences between the three housing groups occurred in basic needs met, which favored permanent housing residents. Safety was the only category where individuals reported more unmet than met needs. The study results suggested that increased overall access to and continuity of care with family physicians, MD or SUD clinicians and community organizations for social integration should be provided to help better these individuals. Case management, stigma prevention, supported employment programs, peer support and day centers should particularly be more widely implemented as interventions that may promote a higher incidence of met needs in specific needs categories.
| S-EPMC7808646 | biostudies-literature
Project description:ObjectiveTo assess parent psychological distress in families of children with common chronic health conditions (CHC) and to explore relationships between parent psychological distress, unmet supportive care needs and children's quality of life (QoL).MethodCross-sectional study involving parents of children diagnosed with a common CHC between 0 and 12 years of age and who had received treatment within the last 5 years. Eligible parents completed an online survey, that included the Depression Anxiety Stress Scale (DASS-21) assessing distress in parents and a 34-item assessment of unmet supportive care needs across 6 domains. Parents completed ratings of their child's current functioning (QoL) using the 23-item PedsQL. Multivariable regression models examined the relative association between unmet needs, children's QoL and parents' depression, anxiety, and stress.ResultsThe sample consisted of 194 parents of children with congenital heart disease (n=97; 50%), diabetes (n=50; 26%), cancer (n=39; 20%), and asthma (n=8; 4%). A significant proportion of parents had moderate-severe symptoms of depression (26%), anxiety (38%), and stress (40%). Of the PedsQL scales, the poorest outcomes were found for emotional and school functioning. Multivariable analyses showed that both higher unmet needs and poorer child emotional functioning were associated with parent depression, anxiety, and stress symptoms.ConclusionEvidence linking parent distress symptoms to higher unmet needs and poorer child emotional functioning suggests these factors may be targets for interventions to alleviate parent distress. Longitudinal research using larger samples is required to replicate findings, and clarify the magnitude and direction of associations.
| S-EPMC10799716 | biostudies-literature
Project description: Not available
| S-EPMC11649292 | biostudies-literature
Project description:BackgroundIt has recently been emphasized that the unmet needs of cancer patients should be evaluated more holistically, for example, by exploring caregivers' perspectives and cross cultural differences. This study explored additional domains or items of unmet needs among Korean cancer patients in reference to the Sheffield Profile for Assessment and Referral to Care (SPARC).MethodsWe conducted four focus group discussions (FGDs) with 15 cancer patients, following a semi-structured format to elicit participants' health perceptions, comments on SPARC, and opinions on the roles of medical professionals to improve the health-related quality of life of cancer patients. We analyzed the verbatim transcripts using a content analysis method.ResultsThe following themes were derived: living as a cancer patient, striving to overcome cancer, changing attitudes toward life after the cancer diagnosis, and ways to live a better life as a cancer patient. The participants asserted the significance of providing adequate treatment information that is easily understood by cancer patients during the conversation between patients and medical professionals. Besides the physical symptoms identified by SPARC, the participants struggled with numbness in their hands and feet and hair loss. Korean cancer patients prominently wished to avoid burdening their family or others in their daily life. They considered the improvement of health behaviors, such as diet and exercise, as part of the treatment, which was not limited to drugs. Furthermore, it was essential to evaluate the value of cancer patients' lives, as they desired to be helpful members of their families and society.ConclusionsThis study identified additional domains and items of unmet needs of Korean cancer patients and broadened the understanding of unmet needs among cancer patients.
| S-EPMC8045373 | biostudies-literature
Project description:IntroductionThe B-Natural study is a multicentre, multinational, observational study of haemophilia B (HB) designed to increase understanding of clinical manifestations, treatment and quality of life (QoL).AimTo characterise and compare QoL in HB across disease severity groups and individuals with inhibitors to identify gaps in treatment.MethodsA total of 224 individuals from 107 families were enrolled from a total of 24 centres in North America (n = 16), Europe (n = 7) and Asia (n = 1). Of these, 68 (30.4%) subjects had severe (<1 IU/dL), median age 15.6 years, 114 (50.9%) moderate (1-5 IU/dL), age 13.3 years, and 42 (18.8%) mild (>5-< 40 IU/dL), age 12.1 years, disease. Twenty-nine participants had inhibitors or a history of inhibitors. Three versions of the EQ-5D instrument were used as a measure of QoL: proxy (ages 4-7), youth (ages 8-15) and self (age 16+). Each instrument included a visual analogue scale ranging from 100 (best health) to 0 (worst health) to assess current day's health (EQ VAS). Range-of-motion (ROM) for elbows, knees and ankles was assessed using a four-point scale, from which a composite score was calculated.ResultsIn all severity groups, a proportion of subjects showed less than optimal QoL. The majority of the mild and moderate severe participants reported a normal EQ-5D health profile (79% and 72%, respectively), whereas about half (47%) of the severe participants and only 13% of the inhibitor participants reported this profile.ConclusionThe B-Natural study reveals impacted QoL in all disease severities of HB including those with inhibitors. Unmet needs remain and include nonsevere HB.
| S-EPMC9314698 | biostudies-literature
Project description:PurposeAs the survival rates of cancer patients have been increasing due to early diagnosis and technological advances in treatment, their caregiver burden has also emerged as an important issue. In view of this situation, this study aims to investigate the unmet needs and quality of life of caregivers of Korean breast cancer survivors.MethodsA multicenter cross-sectional interview survey was performed among 160 caregivers of Korean breast cancer survivors. Caregivers who gave written informed consent to participate completed the Comprehensive Needs Assessment Tool for Cancer Caregivers and EuroQol-5 Dimensions.ResultsThe mean age of the caregivers was 46.4 years, 44.4% (71 of 160) were spouses of patients, and 52.5% (84 of 160) were personally taking care of cancer survivors. Unmet needs were highest in the 'healthcare staff' domain and the item with the highest level of unmet needs was 'needed information about the current status of the patient's illness and its future courses.' Poorer quality of life was closely related to higher levels of unmet needs. In multiple regression analysis, older age, employment, the presence of religion, and higher levels of stress and despair in daily life were associated with higher levels of unmet needs.ConclusionThe most prevalent unmet need in Korean breast cancer caregivers was found in the 'healthcare staff' domain, and their quality of life was closely related to unmet needs. Therefore, healthcare staff is required to make efforts to accurately identify breast cancer caregivers vulnerable in terms of unmet needs and address their unmet needs.
| S-EPMC8331555 | biostudies-literature