scholarly journals Integrating Quality of Life in the Care Pathway of Cancer Patients Undergoing Immunotherapy Treatment: Descriptive, Cross-sectional Survey of an Online Patient Community's Experiences and Expectations

10.2196/25792 ◽  
2022 ◽  
Vol 24 (1) ◽  
pp. e25792
Author(s):  
Ophélie Wilczynski ◽  
Anthony Boisbouvier ◽  
Lise Radoszycki ◽  
François-Emery Cotté ◽  
Anne-Françoise Gaudin ◽  
...  
Keyword(s):  
Quality Of Life ◽  
General Practitioners ◽  
Health Care Professionals ◽  
Checkpoint Inhibitors ◽  
Care Pathway ◽  
Well Being ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Cancer Management

Background New cancer treatments, such as immune checkpoint inhibitors (ICIs), can improve survival and health-related quality of life (HRQoL) in patients with cancer. Although long-term monitoring of HRQoL has been shown to improve survival, integration of HRQoL into everyday practice remains poorly documented. Objective This study describes experiences and expectations of patients treated with ICIs regarding a discussion of HRQoL with health care professionals (HCPs) in cancer management. Methods This cross-sectional study was conducted in an online patient community (Carenity) in France. Patients treated with ICIs for cancer, included between September 2018 and January 2019, completed a questionnaire to assess the involvement of HCP in a discussion of HRQoL and when and what was discussed. Results Of 82 patients included (mean age: 56.9 years, 95% CI 54.2-59.6; 46 [56%] male; 34 [41%] with lung cancer), 62 (76%) reported discussing HRQoL at least once with HCPs, mainly general practitioners (54/82, 66%), oncologists (53/82, 65%), and hospital nurses (50/82, 61%). Around half (45/82, 55%) of the patients were satisfied with these discussions. Discussions with the oncologist were at the patient’s initiative (34/53, 64%). Discussions occurred primarily during follow-up visits (40/62, 65%), when adverse events occurred (30/62, 48%), and at treatment initiation (27/62, 32%). The most discussed dimensions were symptoms (48/62, 77%) and physical well-being (43/62, 69%). With respect to expectations, 54/82 (66%) patients considered oncologists as the most important HCPs for discussing HRQoL. These discussions were desirable throughout the care pathway, particularly at diagnosis (63/82, 77%) and when treatment was initiated (75/82, 92%) or changed (68/82, 83%). All HRQoL dimensions were considered important to discuss. Conclusions With only around half of the patients satisfied with HRQoL discussions, impactful HRQoL integration in clinical practice is critical. According to patients, this integration should involve mainly oncologists and general practitioners, should happen at every step of the care pathway, and should be extended to dimensions that are currently rarely addressed.

scholarly journals Integrating Quality of Life in the Care Pathway of Cancer Patients Undergoing Immunotherapy Treatment: Descriptive, Cross-sectional Survey of an Online Patient Community's Experiences and Expectations (Preprint)

2020 ◽  
Author(s):  
Ophélie Wilczynski ◽  
Anthony Boisbouvier ◽  
Lise Radoszycki ◽  
François-Emery Cotté ◽  
Anne-Françoise Gaudin ◽  
...  
Keyword(s):  
Quality Of Life ◽  
General Practitioners ◽  
Health Care Professionals ◽  
Checkpoint Inhibitors ◽  
Care Pathway ◽  
Well Being ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Cancer Management

BACKGROUND New cancer treatments, such as immune checkpoint inhibitors (ICIs), can improve survival and health-related quality of life (HRQoL) in patients with cancer. Although long-term monitoring of HRQoL has been shown to improve survival, integration of HRQoL into everyday practice remains poorly documented. OBJECTIVE This study describes experiences and expectations of patients treated with ICIs regarding a discussion of HRQoL with health care professionals (HCPs) in cancer management. METHODS This cross-sectional study was conducted in an online patient community (Carenity) in France. Patients treated with ICIs for cancer, included between September 2018 and January 2019, completed a questionnaire to assess the involvement of HCP in a discussion of HRQoL and when and what was discussed. RESULTS Of 82 patients included (mean age: 56.9 years, 95% CI 54.2-59.6; 46 [56%] male; 34 [41%] with lung cancer), 62 (76%) reported discussing HRQoL at least once with HCPs, mainly general practitioners (54/82, 66%), oncologists (53/82, 65%), and hospital nurses (50/82, 61%). Around half (45/82, 55%) of the patients were satisfied with these discussions. Discussions with the oncologist were at the patient’s initiative (34/53, 64%). Discussions occurred primarily during follow-up visits (40/62, 65%), when adverse events occurred (30/62, 48%), and at treatment initiation (27/62, 32%). The most discussed dimensions were symptoms (48/62, 77%) and physical well-being (43/62, 69%). With respect to expectations, 54/82 (66%) patients considered oncologists as the most important HCPs for discussing HRQoL. These discussions were desirable throughout the care pathway, particularly at diagnosis (63/82, 77%) and when treatment was initiated (75/82, 92%) or changed (68/82, 83%). All HRQoL dimensions were considered important to discuss. CONCLUSIONS With only around half of the patients satisfied with HRQoL discussions, impactful HRQoL integration in clinical practice is critical. According to patients, this integration should involve mainly oncologists and general practitioners, should happen at every step of the care pathway, and should be extended to dimensions that are currently rarely addressed.

scholarly journals Adult Children’s Migration and Health-Related Quality of Life Among Older Nepalese Adults

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 92-93
Author(s):  
Ghimire Ghimire ◽  
Devendra Singh ◽  
Sara McLaughlin ◽  
Dhirendra Nath ◽  
Hannah McCarren ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Adult Children ◽  
Well Being ◽  
High Rate ◽  
Health Related Quality ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Related Quality ◽  
Health Related

Abstract Traditionally, adult children have served as primary caretakers and providers for older Nepalese adults. However, out-migration of adult children for employment and other opportunities is increasing. Health-related quality of life (HRQOL) in older Nepalese adults in general and in the context of adult children’s migration is poorly understood. This study aims to assess HRQOL of older Nepali adults and its relationship with adult children’s migration. We used existing cross-sectional survey data on 260 older adults from the Krishnapur municipality, which has witnessed a high rate of adult migration. HRQOL was assessed using the SF-12, which provides a physical (PCS) and mental (MCS) health component. Scores for PCS and MCS range from 0-100; a higher score indicates better HRQOL. Simple and multiple linear regression were used to assess correlates of HRQOL. Participants had suboptimal HRQOL [mean (±SD): PCS =40.4±9.2 and MCS=45.2±7.7]. After adjusting for covariates, adult children’s migration was associated with lower MCS scores (β: -2.33, 95%CI: -4.21, -0.44). Individuals with more than one child had higher MCS scores (β: 2.14, 95%CI: 0.19, 4.09). Females (β: -3.64, 95%CI: -7.21, -0.06) and those with a history of unemployment (β: -6.36, 95%CI: -10.57, -2.15) had lower PCS scores than their respective counterparts. The presence of one or more chronic conditions was associated with significantly lower PCS and MCS. Our findings suggest that out-migration of adult children may negatively effect HRQOL among older Nepali adults, specifically their psychological well-being. Additional research is needed to investigate potential moderating factors that may serve as important buffers.

scholarly journals The Quality of Life and Psychosocial Implications of Cancer-Related Lower-Extremity Lymphedema: A Systematic Review of the Literature

2020 ◽  
Vol 9 (10) ◽  
pp. 3200 ◽  
Author(s):  
Catharine Bowman ◽  
Katherine-Ann Piedalue ◽  
Mohamad Baydoun ◽  
Linda E. Carlson
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Lower Extremity ◽  
Health Care Professionals ◽  
Negative Relationship ◽  
Well Being ◽  
Observational Research ◽  
Cross Sectional ◽  
The Impact

Lower-extremity lymphedema (LEL) is a progressive, lifelong complication of cancer that places a substantial burden upon cancer survivors’ quality of life (QOL) and psychosocial well-being. Despite its prevalence, cancer-related LEL is inconsistently diagnosed, treated, and poorly recognized by health care professionals. The purpose of this systematic review was to summarize and appraise the quantitative literature evaluating the impact of cancer-related LEL on patients’ psychosocial well-being and QOL. Three databases (PubMed, PROQuest, and Scopus) were searched for observational research articles published before May 1st, 2020. Twenty-one articles were eligible (cross-sectional (n = 16), prospective cohort designs (n = 3), and retrospective cohort designs (n = 2)). The majority of studies reported a negative relationship between cancer-related LEL and global QOL and/or one or more psychosocial domains including (1) physical and functional; (2) psycho-emotional; (3) social, relational and financial. A greater number of LEL symptoms and higher LEL severity were associated with poorer QOL. Although the evidence to date suggests a negative relationship between cancer-related LEL and patients’ QOL and psychosocial well-being, there is a substantial need for longitudinal analyses to examine the directionality and temporality of this effect in order to inform cancer survivorship care modelling and improve patient outcomes after cancer.

scholarly journals Burden and quality of life of informal caregivers of children with cerebral palsy

Rev Rene ◽  
2021 ◽  
Vol 22 ◽  
pp. e61752
Author(s):  
Abigail Oluwadunni Davis ◽  
Oladapo Michael Olagbegi ◽  
Kayode Orekoya ◽  
Mathew Adekunle ◽  
Olufemi Oyeleye Oyewole ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cerebral Palsy ◽  
Caregiver Burden ◽  
Informal Caregivers ◽  
Well Being ◽  
Cross Sectional Survey ◽  
Strain Index ◽  
Cross Sectional ◽  
Children With Cerebral Palsy

Objective: to analyze the caregiver burden and the quality of life of informal caregivers of children with cerebral palsy. Methods: the cross-sectional survey involved 109 caregivers of children with cerebral palsy recruited from physiotherapy clinic at a tertiary hospital. The quality of life and caregiver burden were assessed using the Personal Wellbeing Index Scale and the Modified Caregivers’ Strain Index, respectively. Data were analysed using descriptive and inferential statistics. Results: the mean strain index and quality of life scores of the participants were 11.85 ± 5.72 and 64.68 ± 8.03 respectively. The majority (67.9%) of the caregivers had fair personal well-being, while about one-third (33.0%) had high caregiver’s strain. Child’s age (B=2.454; p<0.005) and caregivers’ occupation (B= -2.547; p=0.001) were predictors of caregiver strain. Conclusion: caring for children with cerebral palsy imposed a substantial burden on the caregivers and child’s age and caregivers’ occupation were predictor variables.

scholarly journals Impact of covid-19 on quality of life in COVID recovered patients: A cross-sectional survey

2022 ◽  
Vol 8 (4) ◽  
pp. 153-155
Author(s):  
Jigna Chaudhary ◽  
Sarfraznawaz F Shah
Keyword(s):  
Quality Of Life ◽  
General Health ◽  
Short Form ◽  
Well Being ◽  
Systemic Effect ◽  
Cross Sectional Study ◽  
Exclusion Criterion ◽  
Cross Sectional Survey ◽  
Cross Sectional

COVID-19 pandemic has affected India to a great extent. Till date total of 3.30 crore peoples has been cured and discharged and 44.6 lakh are died due to covid -19 in India. COVID-19 has a long-term systemic effect on lungs, liver, spleen, anxiety and depression and persistence of inflammatory response even after getting cured or COVID negative. Which may affect quality of life. So, there is a need to evaluate quality of life in post COVID patients.A cross-sectional study was conducted on the 100 COVID-19 recovered Participants. Participants were selected on the basis of inclusion and exclusion criterion. Basic assessment of symptom history, medical history and hospitalisation was done by investigator. A quality of life was evaluated using short form-36 questionnaire (SF-36). Statistical analysis was done using Microsoft excel-2019.A total of 100 participants 61% were male and 39% were female participants. We found that general health component was greatly affected with 68.50%. Following general health emotional well-being (69.68%), social functioning (68.14), pain (64.38%), limitation due to emotional problems (64.19%), energy/fatigue (63.3%), limitation due to physical health (59.61) and physical functioning (48.27%) were affected.We found that there was mild – moderate affection in quality of life in covid recovered subjects. There was more affection in quality of life in participants with other comorbidities. We also found that there were persistence of breathlessness and fatigue after recovery.

scholarly journals Associations Between Quality of Life, Psychosocial Well-being and Health-Related Behaviors Among Adolescents in Chinese, Japanese, Taiwanese, Thai and the Filipino Populations: A Cross-Sectional Survey

2020 ◽  
Vol 17 (7) ◽  
pp. 2402 ◽  
Author(s):  
Regina L.T. Lee ◽  
Wai Tong Chien ◽  
Jason Ligot ◽  
Jennifer M. Nailes ◽  
Keiko Tanida ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Well Being ◽  
Self Esteem ◽  
Perceived Quality ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Perceived Quality Of Life ◽  
Health Related Behaviors ◽  
Health Related

Health-related behaviors during adolescence have lifelong impacts. However, there are unclear areas regarding the associations between health-related quality of life and demographic characteristics, as well as physical and psychosocial indicators. The aim of this study was to examine the associations between quality of life and body weight, sleep outcome, social support by age, and cohabitants, given that income, self-esteem, lifestyle, emotional, social and behavioral problems were taken into account among adolescents in East and Southeast Asia. A cross-sectional survey was conducted in Zhengzhou of China, Hong Kong, Kansai region of Japan, Taipei of Taiwan, Bangkok of Thailand and Manila of the Philippines between 2016 and 2017 among 21,359 urban adolescents aged between 9 and 16. The results showed that adolescents who had better self-esteem and control of emotions and behaviors had much higher level of perceived quality of life. Those who were overweight or obese, sleepy in the daytime, and not living with parents had worse quality of life compared with those who were not. In conclusion, psychosocial well-being should have a higher priority in the promotion of quality of life among Asian adolescents. Nevertheless, further studies are required to explore the differences in perceived quality of life between genders and countries.

scholarly journals The Quality of Life of a Multidiagnosis Group of Special Needs Children: Associations and Costs

2010 ◽  
Vol 2010 ◽  
pp. 1-13 ◽  
Author(s):  
Sandy Thurston ◽  
Louise Paul ◽  
Patricia Loney ◽  
Maria Wong ◽  
Gina Browne
Keyword(s):  
Quality Of Life ◽  
Special Needs ◽  
Well Being ◽  
Special Needs Children ◽  
Family Needs ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Complex Needs ◽  
Family Variables

Purpose. To determine the quality of life, associations, and costs of a multidiagnosis group of special needs children.Methods. In this cross-sectional survey families were identified from the Children's Treatment Network, a Canadian multisector program for children with special needs. Families were eligible if the child was aged 2–19 years, resided in Simcoe/York, and if there were multiple child/family needs. Quality of life was measured using the PedsQL (n=429).Results. Quality of life scores were lower in this group compared to published healthy and single disorder groups of children. Quality of life scores decreased with advancing age. Child psychosocial well-being was more strongly associated with child/family variables compared to physical well-being. Health Utilization costs were higher in children with greater physical challenges.Conclusions. Further research is needed in other complex needs child samples to confirm the decrease in quality of life found in these children into adolescence. Investigations into the interactions of child and family variables are needed.

scholarly journals Spiritual quality of life in family carers of patients with advanced cancer—a cross-sectional study

2021 ◽  
Author(s):  
Ingebrigt Røen ◽  
Anne-Tove Brenne ◽  
Cinzia Brunelli ◽  
Hans Stifoss-Hanssen ◽  
Gunn Grande ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Higher Education ◽  
Social Support ◽  
Advanced Cancer ◽  
Health Care Professionals ◽  
Multivariate Regression ◽  
Meaning Making ◽  
Well Being ◽  
Cross Sectional

Abstract Purpose Caring affects carers’ psychological and physical health, mortality, and quality of life (QoL) negatively. Lower spiritual QoL is associated with anxiety and depression, but the spiritual dimension is rarely investigated in carers. The present study aimed to explore which patient- and carer-related characteristics were associated with spiritual QoL in carers of patients with advanced cancer. Methods Secondary analyses were conducted using data from a prospective study investigating integration between oncology and palliative care. Adult patients with advanced cancer and their carers were included, and baseline data considering demographics, clinical characteristics, symptoms, social support, and religious meaning-making were registered. Spiritual QoL was measured using the Functional Assessment of Chronic Illness Therapy - Spiritual well-being (FACIT-Sp-12) questionnaire. Associations to spiritual QoL were explored by bivariate and multivariate regression models. Results In total, 84 carers were included, median age was 62.5 years, 52 (62%) were female, and the average spiritual QoL score was 23.3. In bivariate analyses, higher education, social support, and lower patients’ symptom burden were significantly associated with higher spiritual QoL. The multivariate regression model (n=77) had an explained variance (R2) = 0.34 and showed a significant association for social support, higher education, having children < 18 years living at home, and patient’s age. Conclusion The study indicates that spiritual QoL in carers were low and were negatively affected by several factors related to both carers and patients. However, there could be other important factors not yet described. Health care professionals should be aware of the known associated factors, as carers who hold these may need extra support.

scholarly journals Through the Looking Glass of Social Media. Focus on Self-Presentation and Association with Mental Health and Quality of Life. A Cross-Sectional Survey-Based Study

2021 ◽  
Vol 18 (6) ◽  
pp. 3319
Author(s):  
Jens Christoffer Skogen ◽  
Gunnhild Johnsen Hjetland ◽  
Tormod Bøe ◽  
Randi Træland Hella ◽  
Ann Kristin Knudsen
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Social Media ◽  
Mental Health Problems ◽  
Well Being ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Self Presentation ◽  
Symptoms Of Depression

Social media (SOME) use among adolescents has been linked to mental health and well-being. SOME self-presentation has been highlighted as an important factor to better understand the potential links. The aims of this study were to investigate the association between focus on SOME self-presentation and mental health and quality of life among adolescents. We used a cross-sectional survey, with N = 513 (56%; mean age 17.1 years; 58% boys) students from a senior high school in Norway. Associations between focus on SOME self-presentation and symptoms of anxiety and depression and quality of life were investigated using blobbograms, standardized mean difference (SMD), and gender-specific linear regression models. A high focus on SOME self-presentation was associated with more mental health problems and reduced quality of life. The strength of the associations with symptoms of depression (0.75SMD) and anxiety (0.71SMD) was large, while it was medium-large for quality of life (−0.58SMD). The association was similar across gender in relation to symptoms of anxiety. For symptoms of depression and quality of life, the association was stronger for girls compared to boys. Our findings yield preliminary evidence of a potential relationship between focus on SOME self-presentation and mental health.

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