Describing Unmet Supportive Care Needs among Young Adults with Cancer (25-39 Years) and the Relationship with Health-Related Quality of Life, Psychological Distress, and Illness Cognitions.
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ABSTRACT:
SUBMITTER: Lidington E
PROVIDER: S-EPMC8509768 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundThe COVID-19 pandemic has had a disruptive effect on people with haematological cancers, who represent a high-risk population due to the nature of their disease and immunosuppressive treatments. We aimed to identify the psychological impacts of the COVID-19 pandemic on haematology patients and identify correlated factors to inform the development of appropriate supportive interventions.MethodsThree hundred and ninety-four respondents volunteered their participation in response to a study advertisement distributed online through established haematology groups. Participants completed a self-report online survey exploring wellbeing, psychological distress, unmet supportive care needs, and fear of cancer recurrence.ResultsAt least 1 in 3 respondents (35%) reported clinical levels of distress and nearly 1 in 3 (32%) identified at least one unmet need. Among respondents in remission (n = 134), clinical fear of cancer recurrence was reported by nearly all (95%). Unmet needs, pre-existing health conditions, younger age, financial concerns, and perceived risk of contracting COVID-19 were the dominant factors contributing to psychological distress during the pandemic. Psychological distress, lost income, perceived inadequate support from care team, perceived risk of contracting COVID-19, and being a woman were significantly associated with unmet needs. Psychological distress and concern about the impact of COVID-19 on cancer management were significantly associated with fear of cancer recurrence among respondents in remission.ConclusionResults highlight the high psychological burden and unmet needs experienced by people with haematological cancers during the COVID-19 pandemic and indicate a need for innovative solutions to rapidly identify distress and unmet needs during, and beyond, pandemic times.
| S-EPMC8221273 | biostudies-literature
Project description:(1) Background: Cancer patients are experiencing psychological problems after diagnosis, such as emotional distress and social anxiety, which may increase their demands for emotional and supportive care. This study aimed to assess the influence of both emotional distress and concerns on the supportive care needs of cancer patients receiving home-based healthcare. (2) Methods: In this door-to-door screening program, 97 cancer patients were approached, with a mean age of 73 years old (mean = 73.43; SD = 6.60). (3) Results: As expected, 42.3% of patients highlighted their treatment as their main psychological priority, with 20.6% identifying concerns about the future of their family in this regard. No significant associations with respect to sex were identified in terms of focus, though females reported the need for more frequent psychological support (58.7% vs. 37.3%, respectively, p = 0.035) compared to males. Patients who had experienced an increased number of concerns during the last weeks (IRR = 1.02; 95% CI: 1.00-1.03, p = 0.007) had a significantly greater risk of presenting an increased rate of supportive care needs. Notably, male patients with bone cancer presented a significantly greater number of supportive care needs (mean rank 45.5 vs. 9.0, p = 0.031) respectively, in comparison to those with other types of cancer. (4) Conclusions: Supportive care needs arise from a greater concern and specific type of cancer, highlighting the need for supportive care, such as psychosocial and psychological support. This may have significant implications for treatment and patient outcomes in home care settings.
| S-EPMC10670276 | biostudies-literature
Project description:Screening for social needs during routine medical visits is increasingly common. To date, there are limited data on which social needs are most predictive of health outcomes. The aim of this study is to build a predictive model from integrated social needs screening and health data to identify individual or clusters of social needs that are predictive of chronic illnesses. Using the electronic medical record data from a Federally Qualified Health Center collected from January 2016 to December 2020, demographic, diagnosis, and social needs screening data were used to look at adjusted and unadjusted associations of individual unmet social needs with chronic illnesses (n = 2497). The least absolute shrinkage and selection operator (LASSO) model was used to identify which social need(s) were associated with overall burden of chronic illness, and individual diagnoses of hypertension, obesity, diabetes, and psychiatric illness. The LASSO model identified age, race, language, gender, insurance, transportation, and food insecurity as significant predictors of any chronic illness. Using these variables in a multivariable model, transportation (adjusted odds ratio [aOR] 1.66) was the only social need that remained significantly associated with chronic illness diagnosis. Transportation need was also significantly associated with diabetes (aOR 1.44) and psychiatric illness (aOR 1.98). Food insecurity was associated with obesity (aOR 10.21). Using LASSO models to identify significant social needs, transportation was identified as a predictor in 3 of the 5 models. Further research is warranted to evaluate if addressing patients' transportation needs has the potential to mitigate chronic disease sequelae for vulnerable adults to advance health equity.
| S-EPMC9058872 | biostudies-literature
Project description:PurposeThis study aimed to describe patient self-reported distress over time and how this was associated with wellbeing, and supportive care needs over a 6-month period from commencing chemoradiotherapy for high grade glioma (HGG).MethodsIn this prospective cohort study, participants completed surveys at three time points: before chemoradiotherapy, at 3 and 6 months. These included Distress Thermometer, Functional Assessment of Cancer/Brain Cancer Treatment-general (Fact-G/FACT-BR), Supportive Care Needs Scale (SF-34) and Brain Tumour Specific subscale. Patient survival time was also collected. Group-based trajectory modelling was performed. Multinominal logistic regression assessed variables associated with different distress trajectory groups.ResultsOne hundred and sixteen participants completed assessments at baseline, 89 participants at 3 and 64 at 6 months. Four distress trajectory groups were identified; consistent low distress (18%), low to high distress (38%), high-to low distress (24%) and consistent high distress (19%). Younger participants tended to report decreased distress over time, whereas older participants reported consistently high distress. High distress trajectory participants had less education, lower physical wellbeing, more unmet needs, but higher functional wellbeing compared to the low to high distress trajectory. The number of unmet needs paralleled the patterns of distress over time. The highest unmet needs in people with HGG and high distress were disease specific changes in mental ability and physical side effects.ConclusionThis study demonstrates people with HGG experience ongoing distress and highlights a need for continuous distress and unmet needs screening and referrals.
| S-EPMC10087040 | biostudies-literature
Project description:PurposeTo critically appraise studies to identify experiences of unmet supportive care needs of individuals affected by testicular cancer.MethodsA registered priori systematic review was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. CINAHL, PsycINFO, and MEDLINE were searched for quantitative, qualitative, and mixed methods studies using a wide range of search terms. All articles were double screened according to a pre-determined eligibility criterion. Reference lists of the final included studies were checked for further eligible studies. The review process was managed using Covidence systematic review software. Data from the studies were extracted, methodological quality appraisal conducted, and a narrative synthesis conducted.ResultsOf the 72 papers identified, 36 studies were included. In descending order of frequency of need, psychological needs were identified in 26/36, physical needs 18/36, interpersonal/intimacy needs 19/36, health system/information needs 11/36, cognitive needs 9/36, social needs 7/36, and of equal frequencies counts of 4/36 for family, practical, and patient-clinician information needs. Only one study explored spiritual needs and no daily living needs were identified.ConclusionsThe experience of needs varied in terms of frequency and distress which were commonly influenced by the age of the individual across the cancer care continuum persisting after 1-year post-treatment.Implications for cancer survivorsWhen caring for individuals affected by testicular cancer, clinicians are encouraged to take a holistic lens to cancer care, particularly to explore issue or concerns that young men affected by testicular cancer might be embarrassed or reticent to discuss.
| S-EPMC10960773 | biostudies-literature
Project description:Background: The introduction of aesthetic care programs for cancer patients inside hospitals could help patients cope with the side effects of both disease and treatment. The specific objective of this study is to evaluate whether a complementary and supportive program, called "Health in the Mirror," has a positive effect on participants by analyzing certain psychological variables. Methods: Eighty-eight female cancer patients were included in this analysis. The support program is composed of three group aesthetic interventions that address both physical and psychological aspects that accompany cancer and its treatment. Patients were asked to complete a battery of tests in order to measure the impact of the program on certain psychological variables including anxiety, depression, body image, self-esteem, and quality of life. Outcome variables were measured at three different time-points: prior to participation, on the last day of the program, and after a 3-month follow-up. Results: Participating in the psychosocial support program "Health in the Mirror" determines an improvement in the psychological variables measured. Results revealed a significant reduction in depressive symptoms, anxiety and body image issues, as well as an improvement in self-esteem levels; this suggests that participating in this program could facilitate better adjustment to disease and treatment. Discussion: This study legitimizes the importance of implementing supportive and complementary therapies together with conventional therapies; the therapeutic approach to cancer cannot be restricted solely to medical care, but it must consider the patient as a whole person with needs that are not only physical or medical, but also psychological, social, and existential.
| S-EPMC5613306 | biostudies-other
Project description:BACKGROUND:Some sub-types of haematological cancers are acute and require intensive treatment soon after diagnosis. Other sub-types are chronic, relapse over many years and require life-long cycles of monitoring interspersed with bouts of treatment. This often results in significant uncertainty about the future, high levels of depression and anxiety, and reduced quality of life. Little is known about how to improve care for haematological cancer survivors. This study explored qualitatively, in a sample of haematological cancer survivors, (i) their unmet needs experienced as a result of their disease and treatment; and (ii) strategies that may help address these needs. METHODS:Semi-structured interviews were conducted with 17 adult haematological cancer survivors. Data was analysed using qualitative content analysis. The Supportive Care Framework guided data collection and analysis. RESULTS:Participants had a mean age of 57?years (SD 13). Most were male (n?=?10, 59%). Five themes emerged from the data: (i) changes in unmet needs across the care trajectory (with greatest unmet needs experienced soon after diagnosis, at discharge from hospital and with cancer recurrence); (ii) informational unmet needs requiring improved patient-centred communication; (iii) uncertainty about treatment and the future; (iv) coordinated, tailored and documented post-treatment care planning as a strategy for optimal care delivery; and (v) ongoing support services to meet psychosocial and practical unmet needs by involving peer support, less bureaucratic transport services and flexible work arrangements. CONCLUSIONS:To our knowledge, this is the first qualitative investigation using the Supportive Care Framework to explore unmet needs of haematological cancer survivors. Our findings offer fresh insights into this important area of study. Written, take-home care plans which provide simple but tailored guidance on where to seek additional support may help decrease uncertainty and feelings of vulnerability post-treatment for adult haematological cancer survivors. Future research should further develop and test strategies aimed at addressing unmet needs of haematological cancer survivors identified in this study.
| S-EPMC7686725 | biostudies-literature
Project description:ImportancePatients with cancer experience multiple supportive care needs (eg, coping and financial counseling) that, if not addressed, may result in poor clinical outcomes. Limited work has assessed the factors associated with unmet needs in large and diverse samples of ambulatory oncology patients.ObjectiveTo characterize the factors associated with unmet supportive care needs among ambulatory oncology patients and to assess whether such needs were associated with emergency department (ED) visits and hospitalizations.Design, setting, and participantsBetween October 1, 2019, and June 30, 2022, cross-sectional retrospective analyses were performed in a large and diverse ambulatory cancer population via My Wellness Check, an electronic health record (EHR)-based supportive care needs and patient-reported outcomes (PROs) screening and referral program.Main outcomes and measuresDemographic characteristics, clinical characteristics, and clinical outcomes were extracted from EHRs. Data on PROs (ie, anxiety, depression, fatigue, pain, and physical function), health-related quality of life (HRQOL), and supportive care needs were also collected. Logistic regressions examined factors associated with unmet needs. Cumulative incidence of ED visits and hospitalizations were assessed by Cox proportional hazards regression models adjusting for covariates.ResultsThe 5236 patients in the study had a mean (SD) age of 62.6 (13.1) years and included 2949 women (56.3%), 2506 Hispanic or Latino patients (47.9%), and 4618 White patients (88.2%); 1370 patients (26.2%) indicated Spanish as their preferred language, according to their EHR. A total of 940 patients (18.0%) reported 1 or more unmet needs. Black race (adjusted odds ratio [AOR], 1.97 [95% CI, 1.49-2.60]), Hispanic ethnicity (AOR, 1.31 [95% CI, 1.10-1.55]), 1 to 5 years after diagnosis (AOR, 0.64 [95% CI, 0.54-0.77]), more than 5 years after diagnosis (AOR, 0.60 [95% CI, 0.48-0.76]), anxiety (AOR, 2.25 [95% CI, 1.71-2.95]), depression (AOR, 2.07 [95% CI, 1.58-2.70]), poor physical function (AOR, 1.38 [95% CI, 1.07-1.79]), and low HRQOL scores (AOR, 1.89 [95% CI, 1.50-2.39]) were associated with greater unmet needs. Patients with unmet needs had a significantly higher risk of ED visits (adjusted hazard ratio [AHR], 1.45 [95% CI, 1.20-1.74]) and hospitalizations (AHR, 1.36 [95% CI, 1.13-1.63]) relative to patients without unmet needs.Conclusions and relevanceIn this cohort study of ambulatory oncology patients, unmet supportive care needs were associated with worse clinical outcomes. Patients from racial and ethnic minority groups and those with greater emotional or physical burden were more likely to have 1 or more unmet needs. Results suggest that addressing unmet supportive care needs may be crucial for improving clinical outcomes, and targeted efforts should focus on specific populations.
| S-EPMC10285575 | biostudies-literature
Project description:Patients with cirrhosis have significant physical, psychological, and practical needs. We documented patients' perceived need for support with these issues and the differences with increasing liver disease severity, etiology, and age. Using the supportive needs assessment tool for cirrhosis (SNAC), we examined the rate of moderate-to-high unmet needs (Poisson regression; incidence rate ratio [IRR]) and the correlation between needs and sociodemographic/clinical characteristics (multivariable linear regression) in 458 Australians adults with cirrhosis. Primary liver disease etiology was alcohol in 37.6% of patients, chronic viral hepatitis C in 25.5%, and nonalcoholic fatty liver disease (NAFLD)/nonalcoholic steatohepatitis (NASH) in 23.8%. A total of 64.6% of patients had Child-Pugh class A cirrhosis. Most patients (81.2%) had at least one moderate-to-high unmet need item; more than 25% reported a moderate-to-high need for help with "lack of energy," "sleep poorly," "feel unwell," "worry about … illness getting worse (liver cancer)," "have anxiety/stress," and "difficulty with daily tasks." Adjusting for key sociodemographic/clinical factors, patients with Child-Pugh C had a greater rate of "practical and physical needs" (vs. Child-Pugh A; IRR = 2.94, 95% confidence interval [CI] 2.57-3.37), patients with NAFLD/NASH had a greater rate of needs with "lifestyle changes" (vs. alcohol; IRR = 1.81, 95% CI 1.18-2.77) and "practical and physical needs" (IRR = 1.43, 95% CI 1.23-1.65), and patients aged ≥65 years had fewer needs overall (vs. 18-64 years; IRR = 0.70, 95% CI 0.64-0.76). Higher overall SNAC scores were associated with Child-Pugh B and C (both P < 0.001), NAFLD/NASH (P = 0.028), patients with "no partner, do not live alone" (P = 0.004), unemployment (P = 0.039), ascites (P = 0.022), and dyslipidemia (P = 0.024) compared with their counterparts. Conclusion: Very high levels of needs were reported by patients with cirrhosis. This information is important to tailor patient-centered care and facilitate timely interventions or referral to support services.
| S-EPMC8122374 | 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