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 |
REPOSITORIES: biostudies-literature
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| 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: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: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
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:PurposeTo investigate unmet needs of patients with colorectal cancer (CRC) at the end of treatment and whether unmet needs improve over time. Identify predictors of need following treatment and whether unmet need is associated with worse health-related quality of life (HRQoL).MethodsAs part of the UK ColoREctal Wellbeing (CREW) cohort study, patients treated for CRC completed the Supportive Care Needs Survey Short Form-34 (SCNS SF-34) 15 and 24 months following surgery, along with questionnaires measuring HRQoL, wellbeing, life events, social support, and confidence to manage their cancer before surgery, 3, 9, 15, and 24 months post-surgery.ResultsThe SCNS SF-34 was completed by 526 patients at 15 months and 510 patients at 24 months. About one-quarter of patients had at least one moderate or severe unmet need at both time points. Psychological and physical unmet needs were the most common and did not improve over time. Over 60% of patients who reported 5 or more moderate or severe unmet needs at 15 months experienced the same level of unmet need at 24 months. HRQoL at the beginning of treatment predicted unmet needs at the end of treatment. Unmet needs, specifically physical, psychological, and health system and information needs, were associated with poorer health and HRQoL at the end of treatment.ConclusionsUnmet needs persist over time and are associated with HRQoL. Evaluation of HRQoL at the start of treatment would help inform the identification of vulnerable patients. Assessment and care planning in response to unmet needs should be integrated into person-centred care.Implications for cancer survivorsEarly identification of CRC patients at risk of unmet needs will help infrom personalised survivorship care plans. The implementation of personalised and tailored services are likely to confer HRQoL gains.
| S-EPMC6881415 | biostudies-literature
Project description:BackgroundIt has been suggested that lack of ongoing registration of patient-centered outcomes has resulted in existing care trajectories that have not been optimized for sequelae experienced by meningioma patients. This study aimed to evaluate the structure of current meningioma care and identify issues and potential high-impact improvement initiatives.MethodsUsing the grounded theory approach, a thematic framework was constructed based on the Dutch Comprehensive Cancer Organisation survey about issues in meningioma care trajectories. This framework was used during 3 semistructured interviews and 2 focus groups with patient-partner dyads (n = 16 participants), and 2 focus groups with health care providers (n = 11 participants) to assess issues in current meningioma care trajectories and possible solutions, including barriers to and facilitators for implementation.ResultsIdentified issues (n = 18 issues) were categorized into 3 themes: availability and provision of information, care and support, and screening for (neurocognitive) rehabilitation. A lack of information about the intervention and possible outcomes or complications, lack of support after treatment focusing on bodily and psychological functions, and reintegration into society were considered most important. Sixteen solutions were suggested, such as appointment of case managers (solution for 11/18 issues, 61%), assessment and treatment by physiatrists (22%), and routine use of patient-reported outcome measures for patient monitoring (17%). Barriers for these solutions were lack of budget, capacity, technology infrastructure, and qualified personnel with knowledge about issues experienced by meningioma patients.ConclusionsThis study identified issues in current multidisciplinary meningioma care that are considered unmet needs by patients, partners, and health care providers and could guide innovation of care.
| S-EPMC7318860 | biostudies-literature
Project description:Chronic kidney disease (CKD) is a complex debilitating condition affecting more than 70 million people worldwide. With the increased prevalence in risk factors such as diabetes, hypertension, and cardiovascular disease in an aging population, CKD prevalence is also expected to increase. Increased awareness and understanding of the overall CKD burden by health care teams (patients, clinicians, and payers) is warranted so that overall care and treatment management may improve. This review of the burden of CKD summarizes available evidence of the clinical, humanistic, and economic burden of CKD and the current unmet need for new treatments and serves as a resource on the overall burden. Across countries, CKD prevalence varies considerably and is dependent upon patient characteristics. The prevalence of risk factors including diabetes, hypertension, cardiovascular disease, and congestive heart failure is noticeably higher in patients with lower estimated glomerular filtration rates (eGFRs) and results in highly complex CKD patient populations. As CKD severity worsens, there is a subsequent decline in patient health-related quality of life and an increased use of health care resources as well as burgeoning costs. With current treatment, nearly half of patients progress to unfavorable renal and cardiovascular outcomes. Although curative treatment that will arrest kidney deterioration is desired, innovative agents under investigation for CKD to slow kidney deterioration, such as atrasentan, bardoxolone methyl, and spherical carbon adsorbent, may offer patients healthier and more productive lives.
| S-EPMC3534533 | biostudies-other