Online Platform to Assess Complex Social Relationships and Patient-Reported Outcomes Among Adolescent and Young Adult Cancer Survivors

2021 ◽  
pp. 859-871
Author(s):  
Pragya G. Poudel ◽  
Hailey E. Bauer ◽  
D. Kumar Srivastava ◽  
Kevin R. Krull ◽  
Melissa M. Hudson ◽  
...  
Keyword(s):  
Social Support ◽  
Cancer Survivors ◽  
Social Integration ◽  
Social Relationships ◽  
Patient Reported Outcomes ◽  
Adolescent And Young Adult ◽  
Anxiety And Depression ◽  
P Values ◽  
Patient Reported ◽  
Cancer Experience

PURPOSE Social integration and relationship issues have been understudied among adolescent and young adult (AYA) cancer survivors. This study compared social relationships (social networks, support, and isolation) between AYA cancer survivors and noncancer controls, and identified social integration mechanisms through which the cancer experience influences patient-reported outcomes (PROs). MATERIALS AND METHODS One hundred two AYA cancer survivors and 102 age, sex, and race-matched noncancer controls from a national Internet panel completed an online survey to identify up to 25 of closest friends and relatives whom they have contacted within the past 2 years. Participants' interpersonal connections were used to create a social network index. The Duke-UNC Functional Social Support Questionnaire, UCLA Loneliness Scale, and PROMIS-29 Profile were used to measure social support, perceived isolation or loneliness, and PROs (physical functioning, pain interference, fatigue, anxiety, and depression domains), respectively. Path analysis tested effects of cancer experience on PROs using serial social relationship variables as mediators. RESULTS Compared with controls, survivors of lymphoma, leukemia, and solid tumor had better social networks; however, survivors of solid tumor and central nervous system malignancies had higher perceived loneliness (all P values < .05). Cancer experience was directly associated with poor PROs ( P values < .05 for all domains except fatigue) and indirectly associated through the social network-support-loneliness pathway (all P values < .05). Survivors with higher loneliness had lower physical functioning and higher pain interference, fatigue, anxiety, and depression versus controls with lower loneliness (all P values < .05). CONCLUSION Compared with controls, survivors were more socially connected but experienced greater loneliness, which was associated with poorer PROs. Screening social integration issues during follow-up care and providing appropriate interventions are warranted.

scholarly journals Social relationships and patient-reported outcomes in adolescent and young adult cancer survivors

2020 ◽  
Author(s):  
Pragya G. Poudel ◽  
Hailey E. Bauer ◽  
Zhaoming Wang ◽  
I-Chan Huang
Keyword(s):  
Social Support ◽  
Health Outcomes ◽  
Cancer Survivors ◽  
Social Integration ◽  
Social Relations ◽  
Physical Functioning ◽  
Pain Interference ◽  
Anxiety And Depression ◽  
P Values ◽  
Patient Reported

ABSTRACTImportanceNearly 89,000 adolescents and young adults (AYAs) aged 15 to 39 years old are diagnosed with cancer in U.S. annually. Cancer diagnosis in AYAs often alters achievement of age-specific milestones, interferes with interpersonal relations, and disrupts social life. However, social relations in AYA survivors and associations with patient-reported outcomes (PROs) have been understudied.ObjectiveTo investigate the impact of cancer on PROs in AYA survivors and identify social integration mechanisms through which cancer experiences influence PROs.DesignA cross-sectional study.SettingA national Internet survey panel maintained by Opinions 4 Good (Portsmouth, New Hampshire).Participants102 AYA survivors and 102 age/sex/race-matched noncancer controls.ExposureSurvivors were exposed to chemotherapy and/or radiotherapy during AYA.Main outcomes and measuresParticipants identified 25 closest friends/relatives they have contacted in past two years. Their interpersonal connections with each of 25 friends/relatives were used to create a social network index. The Duke-UNC Functional Social Support Questionnaire, UCLA Loneliness Scale, and PROMIS-29 Profile was used to measure social support, loneliness, and PROs (physical functioning, pain interference, fatigue, anxiety, and depression), respectively.ResultsAYA survivors of lymphoma, leukemia, and solid tumor had significantly better social networks than controls (all p-values <0.05). However, solid tumor and central nervous system malignancy survivors experienced higher loneliness than controls. Compared to controls, survivors had significantly poorer PROs in all domains. Cancer experience directly influenced all PRO domains (all p-values <0.05 except fatigue) and indirectly through social network-social support-loneliness pathways (all p-values <0.05). Survivors with high loneliness had lower physical functioning, higher pain interference, fatigue, anxiety, and depression compared with noncancer controls (all p-values <0.05).Conclusions and relevanceAYA survivors were more socially connected, but experienced greater loneliness than controls. The perceived loneliness greatly influenced PROs. Future research should focus on the functional aspects of social relations rather than considering the structural aspects of social integration, which would provide an opportunity for appropriate interventions to improve health outcomes through social integration.KEY POINTSQuestionHow do social relationships associate with self-reported health outcomes between adolescent and young adult (AYA) cancer survivors and noncancer controls?FindingsThis cross-sectional study revealed that AYA survivors were more socially connected, but perceived greater loneliness compared to noncancer controls. AYA survivors with high loneliness had lower physical functioning, higher pain interference, fatigue, anxiety, and depression compared to noncancer controls.MeaningThe findings of this study suggest that appropriate interventions, focused on improving functional social networks to further meet the needs of AYA cancer survivors, may function as a mean to prevent perceived loneliness and help achieve optimal health outcomes.

scholarly journals Cross-Sectional Associations between Dietary Daily Nicotinamide Intake and Patient-Reported Outcomes in Colorectal Cancer Survivors, 2 to 10 Years Post-Diagnosis

Nutrients ◽  
2021 ◽  
Vol 13 (11) ◽  
pp. 3707
Author(s):  
Wenbo Wu ◽  
Martijn J. L. Bours ◽  
Annaleen Koole ◽  
Marlou-Floor Kenkhuis ◽  
Simone J.P.M. Eussen ◽  
...  
Keyword(s):  
Oxidative Stress ◽  
Colorectal Cancer ◽  
Cancer Survivors ◽  
Serum Protein ◽  
Patient Reported Outcomes ◽  
Protein Carbonyl ◽  
Anxiety And Depression ◽  
Cross Sectional ◽  
Colorectal Cancer Survivors ◽  
Patient Reported

Supplementation with nicotinamide adenine dinucleotide (NAD+) precursors including dietary nicotinamide has been found to boost tissue NAD+ levels and ameliorate oxidative stress-induced damage that contributes to aging and aging-related diseases. The association between dietary NAD+ precursors and patient-reported health-related outcomes in cancer survivors has not been investigated. This study aimed to determine associations of dietary nicotinamide intake with different patient-reported outcomes in colorectal cancer survivors, 2 to 10 years post-diagnosis. A total of 145 eligible participants were recruited into this cross-sectional study. Dietary nicotinamide intake level was calculated based on data from 7-day food diaries. Fatigue was assessed with the Checklist Individual Strength (CIS), which is a subscale of the cancer-specific European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC), and anxiety and depression were assessed with Hospital Anxiety and Depression Scale (HADS). Oxidative stress marker serum protein carbonyl contents and serum NAD+ levels were measured. A hierarchical linear regression model with confounder adjustment was performed to analyze the association of nicotinamide intake, serum protein carbonyl contents, and NAD+ levels with patient-reported outcomes. The median values of daily nicotinamide intake for male and female participants were 19.1 and 14.4 mg, respectively. Daily dietary nicotinamide intake was associated with a lower level of fatigue (β: −14.85 (−28.14, −1.56)) and a lower level of anxiety and depression (β: −4.69 (−8.55, −0.83)). Subgroup analyses by sex showed that a beneficial association between nicotinamide intake and patient-reported outcomes was mainly found in men. To conclude, our findings suggested that higher dietary NAD+ precursor nicotinamide intake was cross-sectionally associated with less patient-reported outcomes in CRC survivors.

737-P: Positive Impact of Social Support and Diabetes Community Participation on Patient-Reported Outcomes

Diabetes ◽  
2020 ◽  
Vol 69 (Supplement 1) ◽  
pp. 737-P
Author(s):  
SARA SUHL ◽  
JONATHAN B. ROST ◽  
KEATON C. STONER ◽  
REBECCA GOWEN ◽  
CATERINA FLORISSI ◽  
...  
Keyword(s):  
Social Support ◽  
Community Participation ◽  
Patient Reported Outcomes ◽  
Positive Impact ◽  
Patient Reported

Patient reported outcomes in patients with desmoid type fibromatosis.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 11574-11574
Author(s):  
VIKAS GARG ◽  
Sameer Rastogi ◽  
Adarsh Barwad ◽  
Rambha Panday ◽  
Sandeep Kumar Bhoriwal ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Symptom Burden ◽  
Benign Neoplasm ◽  
Anxiety And Depression ◽  
Appendicular Skeleton ◽  
Healthy Controls ◽  
Symptom Scale ◽  
Cross Sectional ◽  
Patient Reported ◽  
The Impact

11574 Background: Desmoid type fibromatosis (DTF) is a rare benign neoplasm with infiltrative growth and high local recurrences. Due to long disease course, unpredictable growth pattern, and low mortality, using only survival outcomes may be inappropriate. In this study we assessed the impact of DTF on health related quality of life (HRQoL). Methods: This was a cross-sectional study done in patients with DTF. The study participants were asked to fill the EORTC QLQ-C30, GAD-7 and PHQ- 9 q uestionnaires to assess HRQoL, anxiety and depression . Outcomes were also compared with healthy controls. Results: 204 subjects (102 DTF patients and 102 healthy controls) were recruited. Study parameters have been summarized in Table. Appendicular skeleton (limbs + girdle) was most commonly involved in 59 % patients and abdominal wall or mesentery was involved in 22.5 %. Patients have received median of 2 lines of therapy. 54 % patients were currently on sorafenib and 41 % were under active surveillance. Mean global health status in DTF patient 65.58 ± 22.64, was significantly lower than healthy controls. Similarly, DTF patients scored low on all functional scales except cognitive functioning. Symptom scale showed significantly higher symptom burden of fatigue, pain, insomnia and financial difficulties. Anxiety & depression was observed in 39.22 % and 50 % of DTF patients respectively. DTF patients had higher rates of mild, moderate and severe anxiety and depression compared to healthy controls. No difference was observed based on site of disease. Conclusions: DTF patients have significant symptom burden, poor functioning, and heightened anxiety and depression. Patient reported outcomes should be routinely used to assess treatment efficacy in DTF patients.[Table: see text]

scholarly journals Effect of Social Support and Marital Status on Perceived Surgical Effectiveness and 30-Day Hospital Readmission

2017 ◽  
Vol 7 (8) ◽  
pp. 774-779 ◽  
Author(s):  
Owoicho Adogwa ◽  
Aladine A. Elsamadicy ◽  
Victoria D. Vuong ◽  
Ankit I. Mehta ◽  
Raul A. Vasquez ◽  
...  
Keyword(s):  
Social Support ◽  
Hospital Stay ◽  
Marital Status ◽  
Spine Surgery ◽  
Patient Reported Outcomes ◽  
Complication Rates ◽  
Readmission Rates ◽  
Outcomes Measures ◽  
Significant Difference ◽  
Patient Reported

Study Design: Retrospective cohort review. Objective: To determine whether higher levels of social support are associated with improved surgical outcomes after elective spine surgery. Methods: The medical records of 430 patients (married, n = 313; divorced/separated/widowed, n = 71; single, n = 46) undergoing elective spine surgery at a major academic medical center were reviewed. Patients were categorized by their marital status at the time of surgery. Patient demographics, comorbidities, and postoperative complication rates were collected. All patients had prospectively collected outcomes measures and a minimum of 1-year follow-up. Patient reported outcomes instruments (Oswestry Disability Index, Short Form–36, and visual analog scale–back pain/leg pain) were completed before surgery, then at 1 year after surgery. Results: Baseline characteristics were similar in all cohorts. There was no statistically significant difference in the length of hospital stay across all 3 cohorts, although “single patients” had longer duration of in-hospital stays that trended toward significance (single 6.24 days vs married 4.53 days vs divorced/separated/widowed 4.55 days, P = .05). Thirty-day readmission rates were similar across all cohorts (married 7.03% vs divorced/separated/widowed 7.04% vs single 6.52%, P = .99). Additionally, there were no significant differences in baseline and 1-year patient reported outcomes measures between all groups. Conclusions: Increased social support did not appear to be associated with superior short and long-term clinical outcomes after spine surgery; however, it was associated with a shorter duration of in-hospital stay with no increase in 30-day readmission rates.

scholarly journals The feasibility of web surveys for obtaining patient-reported outcomes from cancer survivors: a randomized experiment comparing survey modes and brochure enclosures

2019 ◽  
Vol 19 (1) ◽  
Author(s):  
Morgan M. Millar ◽  
Joanne W. Elena ◽  
Lisa Gallicchio ◽  
Sandra L. Edwards ◽  
Marjorie E. Carter ◽  
...  
Keyword(s):  
Confidence Interval ◽  
Cancer Survivors ◽  
Cancer Registry ◽  
Patient Reported Outcomes ◽  
Web Surveys ◽  
Adjusted Risk ◽  
Adjusted Risk Ratio ◽  
Patient Reported ◽  
Paper Survey ◽  
Survey Modes

Abstract Background Central cancer registries are often used to survey population-based samples of cancer survivors. These surveys are typically administered via paper or telephone. In most populations, web surveys obtain much lower response rates than paper surveys. This study assessed the feasibility of web surveys for collecting patient-reported outcomes via a central cancer registry. Methods Potential participants were sampled from Utah Cancer Registry records. Sample members were randomly assigned to receive a web or paper survey, and then randomized to either receive or not receive an informative brochure describing the cancer registry. We calculated adjusted risk ratios with 95% confidence intervals to compare response likelihood and the demographic profile of respondents across study arms. Results The web survey response rate (43.2%) was lower than the paper survey (50.4%), but this difference was not statistically significant (adjusted risk ratio = 0.88, 95% confidence interval = 0.72, 1.07). The brochure also did not significantly influence the proportion responding (adjusted risk ratio = 1.03, 95% confidence interval = 0.85, 1.25). There were few differences in the demographic profiles of respondents across the survey modes. Older age increased likelihood of response to a paper questionnaire but not a web questionnaire. Conclusions Web surveys of cancer survivors are feasible without significantly influencing response rates, but providing a paper response option may be advisable particularly when surveying older individuals. Further examination of the varying effects of brochure enclosures across different survey modes is warranted.

scholarly journals Patient-Reported Outcomes of Arsenic-Related Skin Lesions in China

2020 ◽  
Vol 2020 ◽  
pp. 1-6
Author(s):  
Yajia Li ◽  
Danrong Jing ◽  
Yi Xiao ◽  
Xiaoyan Huang ◽  
Minxue Shen
Keyword(s):  
Sleep Quality ◽  
Quality Index ◽  
Patient Reported Outcomes ◽  
Rating Scale ◽  
Arsenic Concentration ◽  
Arsenic Exposure ◽  
Skin Lesions ◽  
Anxiety And Depression ◽  
Patient Reported ◽  
Chronic Arsenic Exposure

Purpose. Previous studies confirmed that chronic arsenic exposure could lead to pigmentary changes and hyperkeratosis. However, skin health-related quality of life (HRQoL) among people under lifetime arsenic exposure remains underappreciated. Our study is aimed at investigating several patient-reported outcomes in a population under chronic arsenic exposure. Patients and Methods. A cross-sectional study was conducted in communities in Shimen, China. Dermatologists performed skin examinations for participants. Patient-reported outcomes (PROs) included HRQoL, itch, sleep quality, and symptoms of anxiety and depression. The Dermatology Life Quality Index (DLQI) was used to measure skin HRQoL. The numerical rating scale (NRS) was used to measure the intensity of itching. Sleep disturbance was measured by Pittsburgh Sleep Quality Index (PSQI). Anxiety and depression were measured by two-item Generalized Anxiety Disorder (GAD-2) and Patient Health Questionnaire (PHQ-2), respectively. Results. A total of 464 participants suffering from arsenic-related skin lesions finished the assessment of DLQI. Pigmentary changes and arsenical keratosis were not associated with the patient-reported outcomes except PHQ-2. Hair arsenic exceeding 1 μg/g was associated with higher itch NRS and DLQI (P<0.05). Itch NRS (adjusted β=0.80, 95% CI: 0.70–0.90, P<0.01) and hair arsenic concentration (adjusted β=0.12, 95% CI: 0.01–0.24, P<0.05) were independently associated with the DLQI. Conclusion. HRQoL, sleep quality, and mental wellbeing are impaired in residents under chronic arsenic exposure. Itching and hair arsenic are independent risk factors for impaired HRQoL.

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