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.

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.

Association between health status and social integration/loneliness in survivors of adolescent and young adult (AYA) cancers.

2017 ◽  
Vol 35 (15_suppl) ◽  
pp. e21563-e21563
Author(s):  
I-Chan Huang ◽  
Conor Jones ◽  
Deo Kumar Srivastava ◽  
Melissa M. Hudson ◽  
Leslie L. Robison ◽  
...  
Keyword(s):  
Social Support ◽  
Social Network ◽  
Health Status ◽  
Health Outcomes ◽  
Social Integration ◽  
Solid Tumors ◽  
Physical Functioning ◽  
Adolescent And Young Adult ◽  
Contact Frequency ◽  
Health Related

e21563 Background: AYA cancer survivors are at risk of various adverse health outcomes, but the relation between health status, social integration (i.e., social network and support) and loneliness is understudied. Methods: 102 AYA survivors (mean age = 25 years; diagnoses = leukemia 27%; lymphoma 24%; brain tumors 9%; solid tumors 41%) and 102 age-sex-matched controls were recruited from a community-based online panel. Participants reported social network information (e.g., contact frequency, resources for health counseling) for up to 25 of closest friends/relatives, which was used to create a functional social network index. UCLA Loneliness Scale, Duke-UNC Functional Social Support Questionnaire and PROMIS Health Profile were used to measure loneliness, social support and health-related outcomes (physical functioning, depression, anxiety, fatigue and pain), respectively. Multiple linear regression was used to compare functional social network, social support and loneliness between survivors and controls, and to assess the relation between health outcomes and perceived loneliness. Results: Compared to controls, survivors of lymphoma (b = 1.98; p = 0.005), leukemia (b = 1.67; p = 0.012) and solid tumors (b = 1.22; p = 0.030) had a higher functional social network index. However, social support did not differ between survivors and controls (p’s > 0.05). Brain tumor survivors (b = 15.65; p = 0.006) and solid tumor survivors (b = 10.83; p < 0.001) had more loneliness than controls. Compared to low loneliness controls, high loneliness survivors had significantly lower physical functioning (b = -7.72; p < 0.001) and higher anxiety (b = 8.35; p < 0.001), depression (b = 10.57; p < 0.001), fatigue (b = 5.52; p = 0.011) and pain (b = 6.37; p < 0.001) after adjusting for age, sex, education, social integration, and number of self-reported chronic health conditions. Conclusions: Loneliness is significantly associated with poor health-related outcomes in AYA survivors, which is independent of the influence of social integration. Future research is warranted to understand the relation between health status and social interactions among AYA survivors to inform intervention-based strategies.

scholarly journals Health outcomes of sexual and gender minorities after cancer: a systematic review

2021 ◽  
Vol 10 (1) ◽  
Author(s):  
Mandi L. Pratt-Chapman ◽  
Ash B. Alpert ◽  
Daniel A. Castillo
Keyword(s):  
Systematic Review ◽  
Health Outcomes ◽  
Cancer Survivors ◽  
Cochrane Central Register ◽  
Transgender Persons ◽  
Patient Reported ◽  
History Of ◽  
Reported Health ◽  
And Gender ◽  
After Cancer

Abstract Purpose Cancer research on sexual and gender minority (SGM) populations is gaining momentum. The purpose of this systematic review was to examine what is currently known in the research literature regarding patient-reported health outcomes after cancer treatment among SGM populations. Methods In March 2021, a medical librarian conducted a systematic keyword search on PubMed, Embase, Scopus, Web of Science, PsycINFO, ClinicalTrials.gov, and the Cochrane Central Register of Controlled Trials. The primary inclusion criterion was assessment of at least one physical, psychosocial, emotional, or functional patient-reported health outcome related to the impacts of cancer diagnosis and/or treatment. Articles that met inclusion criteria were reviewed in their entirety, charted in a Word Table, and assessed for quality. Quality considerations included study design, sampling approach, diversity of sample, measures used, and analytic procedures. Studies were synthesized based on type of cancer study participants experienced. Results Sixty-four studies were included in the final analysis: most were quantitative, secondary analyses or cross-sectional studies with convenience samples, and focused on people with a history of breast or prostate cancer. Differences between sexual minority men and women in terms of coping and resilience were noted. Few studies reported on experiences of transgender persons and none reported on experiences of intersex persons. Conclusions A growing literature describes the patient-reported health outcomes of SGM people with a history of cancer. This study summarizes important between-group differences among SGM and heterosexual, cisgender counterparts that are critical for clinicians to consider when providing care. Implications for cancer survivors Sexual orientation and gender identity are relevant to cancer survivors’ health outcomes. Subgroups of SGM people have differential experiences and outcomes related to cancer and its impacts.

scholarly journals OMERACT Endorsement of Patient-reported Outcome Instruments in Antineutrophil Cytoplasmic Antibody–associated Vasculitis

2017 ◽  
Vol 44 (10) ◽  
pp. 1529-1535 ◽  
Author(s):  
Joanna C. Robson ◽  
Gunnar Tomasson ◽  
Nataliya Milman ◽  
Sue Ashdown ◽  
Annelies Boonen ◽  
...  
Keyword(s):  
Physical Functioning ◽  
Working Group ◽  
Patient Reported Outcomes ◽  
Controlled Trial ◽  
Antineutrophil Cytoplasmic Antibody ◽  
Pain Interference ◽  
Disease Assessment ◽  
Measurement Information ◽  
Patient Reported ◽  
Disease Specific

Objective.The antineutrophil cytoplasmic antibody–associated vasculitides (AAV) are multiorgan diseases. Patients with AAV report impairment in their health-related quality of life (HRQOL) and have different priorities regarding disease assessment compared with physicians. The Outcome Measures in Rheumatology (OMERACT) Vasculitis Working Group previously received endorsement for a core set of domains in AAV. Two approaches to measure patient-reported outcomes (PRO) were presented at OMERACT 2016.Methods.A novel 5-step tool was used to facilitate assessment of the instruments by delegates: the OMERACT Filter 2.0 Instrument Selection Algorithm, with a red-amber-green checklist of questions, including (1) good match with domain (face and content validity), (2) feasibility, (3) do numeric scores make sense (construct validity)?, (4) overall ratings of discrimination, and (5) can individual thresholds of meaning be defined? Delegates gave an overall endorsement. Three generic Patient-Reported Outcomes Measurement Information System (PROMIS) instruments (fatigue, physical functioning, and pain interference) and a disease-specific PRO, the AAV-PRO (6 domains related to symptoms and HRQOL), were presented.Results.OMERACT delegates endorsed the use of the PROMIS instruments for fatigue, physical functioning, and pain interference (87.6% overall endorsement) and the disease-specific AAV-PRO instrument (89.4% overall endorsement).Conclusion.The OMERACT Vasculitis Working Group gained endorsement by OMERACT for use of the PROMIS and the AAV-PRO in clinical trials of vasculitis. These instruments are complementary to each other. The PROMIS and the AAV-PRO need further work to assess their utility in longitudinal settings, including their ability to discriminate between treatments of varying efficacy in the setting of a randomized controlled trial.

A preoperative interdisciplinary biopsychosocial opioid reduction program in patients on chronic opioid analgesia prior to spine surgery: A preliminary report and case series

2016 ◽  
Vol 13 (1) ◽  
pp. 27-31 ◽  
Author(s):  
Sameer Hassamal ◽  
Margaret Haglund ◽  
Karl Wittnebel ◽  
Itai Danovitch
Keyword(s):  
Spine Surgery ◽  
Physical Functioning ◽  
Preliminary Data ◽  
Case Series ◽  
Pain Interference ◽  
Opioid Analgesia ◽  
Opioid Dose ◽  
Patient Reported ◽  
Reduction Program ◽  
The Mean

AbstractBackgroundSpine surgery candidates are commonly treated with long-term opioid analgesia. However, chronic opioid analgesia is associated with poor pain control, psychological distress, decreased functional status and operative complications. Therefore, our medical centre piloted an outpatient biopsychosocial interdisciplinary opioid reduction program for spine surgery candidates on chronic opioid analgesia.MethodsOur case series reviews the outcomes of the first 5 interdisciplinary program completers. Data was collected on admission to the program, preoperatively at completion of the program, and 1 month postoperatively. We recorded changes in pain interference scores, physical functioning, and symptoms of depression and anxiety as captured by the Patient-Reported Outcome Measurement Information System (PROMIS-29) Profile.ResultsThe mean duration of the preoperative opioid reduction program was 6–7 weeks. The mean morphine equivalent daily dose (SD) decreased from 238.2 (226.9) mg on admission to 157.1 (161.0) mg preoperatively and 139.1 (84.0) mg one month postoperatively. Similarly, the mean pain interference score (SD) decreased from 72.4 (5.1) on admission to 66.5 (6.9) preoperatively and 67.7 (5.4) one month postoperatively. The preoperative opioid dose and pain interference scores decreased in all 5 patients, but one month postoperatively increased in one patient related to a surgical complication. Pre- and postoperative depression, anxiety and fatigue improved in all patients. Satisfaction with participation in social roles, sleep disturbances, and physical functioning improved in most patients.ConclusionsPre- and post-operative pain improved despite the opioid dose being tapered. These preliminary data suggest that a short-term outpatient preoperative interdisciplinary biopsychosocial opioid reduction program is safe, feasible, and improves patient-centred outcomes.ImplicationsOur preliminary data support the rationale for expansion of the opioid reduction program; opioid use and pain should be evaluated in all surgical candidates. These findings need to be replicated in larger studies.

scholarly journals Physical Activity, Mental Health and Technology Preferences for Support during COVID-19: A Cross-Sectional Report of Cancer Survivors (Preprint)

2020 ◽  
Author(s):  
Jamie M Faro ◽  
Kristin M Mattocks ◽  
Catherine S Nagawa ◽  
Stephenie C Lemon ◽  
Bo Wang ◽  
...  
Keyword(s):  
Mental Health ◽  
Physical Activity ◽  
Social Support ◽  
Cancer Survivors ◽  
Text Messaging ◽  
Sedentary Time ◽  
Digital Health ◽  
Anxiety And Depression ◽  
Phone Calls ◽  
Physical Activity Programs

BACKGROUND COVID-19 has had significant health and behavioral impacts on populations worldwide. Cancer survivors are at particular risk of changes in behavioral patterns, as they were encouraged to be more vigilant and observe stricter social distancing guidelines. OBJECTIVE We explored 1) changes in physical activity/sedentary behaviors since COVID-19, and mental health status, 2) alternative strategies to support the survivors’ physical activity and social support during and after COVID-19 including the role of digital health. METHODS A survey was distributed to cancer survivors participating (currently or in the past) in a community-based physical activity program, LIVESTRONG at the Y. Questions addressed pre-COVID vs. current changes in physical activity and sedentary time. Anxiety and depression were assessed using the GAD-2 and PHQ-2 with scores ≥3 classified as clinically diagnosed anxiety/depression. Digital health preferences were assessed using closed ended questions. Descriptive statistics were calculated. Open-ended responses addressing other preferences for physical activity programs and social support were analyzed, coded and categorized into themes. RESULTS Of the 61 participants, (mean age=62 ± 10.4; female=83.6%), 67.2% reported performing less physical activity and 67.2% reported sitting more since COVID-19 began. For the GAD-2 and PHQ-2, 24.6% and 26.2% met the criteria for clinical anxiety and depression, respectively. All participants (100%) reported having a cellphone; 90% had a smartphone. Preferences reported for physical activity programming (n=28) included three themes: 1) Use of digital/remote platforms (Zoom, online, videos), 2) Specific activities and locations (e.g. outdoors, walking, gardening, biking, YMCA, senior centers) and 3) Social support is important regardless of the type of activity (e.g. family, friends, peers and coaches). Participants reported a mean score of 71.8 ± 21.4 (scale 0-100) for importance of social support during physical activity programs. Social support preferences (n=15) included three themes: 1) Support from remote platforms (e.g. text messaging, Zoom, phone calls, emails and Facebook), 2) Tangible support in person (YMCA, Senior Center), and 3) Social support with no specific platform (e.g. small groups and family/friend visits). CONCLUSIONS Since the start of COVID-19, cancer survivors in our study have experienced decreased physical activity and increased sedentary time. Depression and anxiety were reported by one-quarter of respondents. Both physical activity and mental health are critical factors in survivor’s quality of life, and interventions tailored to survivors’ preferences for activity are necessary. Digital remote physical activity programs with added social support may be a promising way to address ongoing needs during and after the pandemic.

scholarly journals Associations of the dietary World Cancer Research Fund/American Institute for Cancer Research (WCRF/AICR) recommendations with patient-reported outcomes in colorectal cancer survivors 2–10 years post-diagnosis: a cross-sectional analysis

2020 ◽  
pp. 1-13
Author(s):  
Marlou-Floor Kenkhuis ◽  
Bernadette W. A. van der Linden ◽  
Jose J. L. Breedveld-Peters ◽  
Janna L. Koole ◽  
Eline H. van Roekel ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Cancer Research ◽  
Cancer Survivors ◽  
Physical Functioning ◽  
Patient Reported Outcomes ◽  
Fruit And Vegetables ◽  
Research Fund ◽  
American Institute ◽  
Cross Sectional ◽  
Patient Reported

Abstract The World Cancer Research Fund and American Institute for Cancer Research (WCRF/AICR) advise cancer survivors to follow their lifestyle recommendations for cancer prevention. Adhering to these recommendations may have beneficial effects on patient-reported outcomes after a cancer diagnosis, but evidence is scarce. We aimed to assess associations of the individual dietary WCRF/AICR recommendations regarding fruit and vegetables, fibre, fast foods, red and processed meat, sugar-sweetened drinks and alcohol consumption with patient-reported outcomes in colorectal cancer (CRC) survivors. Cross-sectional data of 150 stage I–III CRC survivors, 2–10 years post-diagnosis, were used. Dietary intake was measured by 7-d dietary records. Validated questionnaires were used to measure health-related quality of life (HRQoL), fatigue and neuropathy. Confounder-adjusted linear regression models were used to analyse associations of each WCRF/AICR dietary recommendation with patient-reported outcomes. Higher vegetable intake (per 50 g) was associated with better global QoL (β 2·6; 95 % CI 0·6, 4·7), better physical functioning (3·3; 1·2, 5·5) and lower levels of fatigue (−4·5; −7·6, −1·4). Higher fruit and vegetables intake (per 100 g) was associated with better physical functioning (3·2; 0·8, 5·5) and higher intake of energy-dense food (per 100 kJ/100 g) with worse physical functioning (−4·2; −7·1, −1·2). No associations of dietary recommendations with neuropathy were found. These findings suggest that adhering to specific dietary WCRF/AICR recommendations is associated with better HRQoL and less fatigue in CRC survivors. Although the recommendations regarding healthy dietary habits may be beneficial for the well-being of CRC survivors, longitudinal research is warranted to gain insight into the direction of associations.

Post-traumatic stress disorder in young breast cancer survivors.

2016 ◽  
Vol 34 (3_suppl) ◽  
pp. 202-202
Author(s):  
Danny A. Vazquez ◽  
Shoshana M. Rosenberg ◽  
Shari I. Gelber ◽  
Kathryn Jean Ruddy ◽  
Evan Morgan ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Social Support ◽  
Cancer Survivors ◽  
Breast Cancer Survivors ◽  
Stress Disorder ◽  
Stage I ◽  
Fear Of Recurrence ◽  
Anxiety And Depression ◽  
Psychiatric Comorbidities ◽  
Young Breast Cancer

202 Background: Posttraumatic stress disorder (PTSD) is associated with morbidity and mortality in affected populations. Cancer survivors experience PTSD at a rate higher than the general population, with young age and female gender identified as risk factors. While young women with breast cancer experience greater psychosocial distress in general following diagnosis (dx), little is known about PTSD in this population. Methods: Women dx’d with Stage I-III breast cancer at age ≤ 40 were surveyed as a part of a multi-site cohort study. Demographic, treatment, psychosocial characteristics (including self-reported psychiatric conditions and use of psychiatric medications prior to dx), anxiety and depression (Hospital Anxiety and Depression Scale), fear of recurrence (Lasry Scale), and social support (Medical Outcomes Study) were assessed within 1 year after dx. PTSD was measured at 30 months post-dx using the PTSD Checklist – Civilian Version; a score ≥ 50 was considered positive for PTSD. Univariable and stepwise multivariable logistic regression were used to evaluate factors associated with PTSD. Results: 572 women were eligible for this analysis; median age at dx was 37 (range: 17-40); 87% had Stage I or II cancer. 37/572 women (6.5%) met criteria for PTSD at 30 months. Lower educational attainment, less financial comfort, less social support, stage 2 (vs. 1) disease, receipt of chemotherapy, fear of recurrence, anxiety and depression, and psychiatric comorbidities were associated (p ≤ 0.05) with PTSD in univariable analyses. Chemotherapy (OR = 3.48, 95% CI = 1.09-11.06), anxiety by HADS (OR = 20.29, 95% CI = 7.83-52.53), and psychiatric comorbidities (OR = 4.22, 95% CI = 1.40-12.74) were associated with increased likelihood of PTSD, whereas college education (OR = 0.25, 95% CI = 0.10-0.59) and greater social support (OR = 0.41, 95% CI = 0.17-0.99) appeared to be protective in multivariable analyses. Conclusions: PTSD affects a minority of young breast cancer survivors, with the prevalence in our cohort similar to that seen in other breast cancer populations. Early identification of those at risk for developing PTSD is essential for the adequate treatment of affected women and for the improvement of health outcomes and quality of life in cancer survivors.

Men and Women in Transition : Patterns of Stress, Strain, and Social Relations

1995 ◽  
Vol 20 (1) ◽  
pp. 13-24 ◽  
Author(s):  
Anup K Singh ◽  
Punam Sahgal
Keyword(s):  
Social Support ◽  
Social Relations ◽  
Working Women ◽  
Well Being ◽  
Anxiety And Depression ◽  
Dual Career ◽  
Stress Strain ◽  
Men And Women ◽  
Dual Career Couples ◽  
Women In Transition

Based on 172 responses to a questionnaire containing various measures of stress, strain, social support, and undermining, this article by Anup K Singh and Punam Sahgal examines patterns of these measures among men and women as well as single and dual career couples. The results indicate that men experience greater role erosion than women, single career husbands have higher well-being, and working women display higher irritability, anxiety, and depression.

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