Digital Interventions to Modify Skin Cancer Risk Behaviors in a National Sample of Young Adults: Randomized Controlled Trial.

BACKGROUND: Young adults engage in behaviors that place them at risk for skin cancer. Dissemination of digital health promotion interventions via social media is a potentially promising strategy to modify skin cancer risk behaviors by increasing UV radiation (UVR) protection and skin cancer examinations. OBJECTIVE: This study aimed to compare 3 digital interventions designed to modify UVR exposure, sun protection, and skin cancer detection behaviors among young adults at moderate to high risk of skin cancer. METHODS: This study was a hybrid type II effectiveness-implementation randomized controlled trial of 2 active interventions, a digital skin cancer risk reduction intervention (UV4.me [basic]) compared with an enhanced version (UV4.me2 [enhanced]), and an electronic pamphlet (e-pamphlet). Intervention effects were assessed over the course of a year among 1369 US young adults recruited primarily via Facebook and Instagram. Enhancements to encourage intervention engagement and behavior change included more comprehensive goal-setting activities, ongoing proactive messaging related to previously established mediators (eg, self-efficacy) of UVR exposure and protection, embedded incentives for module completion, and ongoing news and video updates. Primary outcome effects assessed via linear regression were UVR exposure and sun protection and protection habits. Secondary outcome effects assessed via logistic regression were skin self-exams, physician skin exams, sunscreen use, indoor tanning, and sunburn. RESULTS: The active interventions increased sun protection (basic: P=.02; enhanced: P<.001) and habitual sun protection (basic: P=.04; enhanced P=.01) compared with the e-pamphlet. The enhanced intervention increased sun protection more than the basic one. Each active intervention increased sunscreen use at the 3-month follow-up (basic: P=.03; enhanced: P=.01) and skin self-exam at 1 year (basic: P=.04; enhanced: P=.004), compared with the e-pamphlet. Other intervention effects and differences between the Basic and Enhanced Intervention effects were nonsignificant. CONCLUSIONS: The active interventions were effective in improving several skin cancer risk and skin cancer prevention behaviors. Compared with the basic intervention, the enhanced intervention added to the improvement in sun protection but not other behaviors. Future analyses will explore intervention engagement (eg, proportion of content reviewed). TRIAL REGISTRATION: ClinicalTrials.gov NCT03313492; http://clinicaltrials.gov/ct2/show/NCT03313492.

Factors associated with health-related quality of life in a cohort of cancer survivors in New Jersey.

BACKGROUND: Although there is extensive literature on correlates of health-related quality of life (HRQoL) among cancer survivors, there has been less attention paid to the role of socioeconomic disadvantage and survivorship care transition experiences in HRQoL. There are few large cohort studies that include a comprehensive set of correlates to obtain a full picture of what is associated with survivors' HRQ0L. This cohort study of recent cancer survivors in New Jersey aimed to explore the association between social determinants of health, health history, health behaviors, survivorship care experiences, and psychosocial factors in HRQoL. METHODS: Eligible survivors were residents of New Jersey diagnosed with genitourinary, female breast, gynecologic, colorectal, lung, melanoma, or thyroid cancers. Participants completed measures of social determinants, health behaviors, survivorship care experiences, psychosocial factors, and HRQoL. Separate multiple regression models predicting HRQoL were conducted for each of the five domains (social determinants, health history, health behaviors, survivorship care experiences, psychosocial factors). Variables attaining statistical significance were included in a hierarchical multiple regression arranged by the five domains. RESULTS: 864 cancer survivors completed the survey. Lower global HRQoL was associated with being unemployed, more comorbidities, a less healthy diet, lower preparedness for survivorship, more unmet support needs, and higher fear about cancer recurrence. Two psychosocial factors, unmet support needs and fear of recurrence, played the most important role in HRQoL, accounting for more than 20% of the variance. Both unmet support needs and fear of recurrence were significant correlates of physical, functional, and emotional HRQoL domains. CONCLUSIONS: Interventions seeking to improve cancer survivors' HRQoL may benefit from improving coordinated management of comorbid medical problems, fostering a healthier diet, addressing unmet support needs, and reducing survivors' fears about cancer recurrence.

Psychosocial care for cancer survivors: A global review of national cancer control plans.

OBJECTIVE: National Cancer Control Plans (NCCPs) are high-level policy documents that prioritise actions to be taken to improve cancer control activities. As the number of cancer survivors grows globally, there is an urgent need to assess whether and how psychosocial care across the cancer care continuum is included in NCCPs. This review aimed to ascertain the extent to which NCCPs referenced psycho-oncology care for cancer survivors in the post-treatment phase. METHODS: NCCPs were obtained from the International Cancer Control Partnership (ICCP) portal (in November 2021) and reviewed in two phases. In Phase 1, all available NCCPs were screened to determine whether they mentioned psycho-oncology or survivorship. In Phase 2, reviewers extracted data from the NCCPs identified in Phase 1 on the degree that each plan articulated objectives/goals to improve psychosocial care in the post-treatment survivorship phase. RESULTS: We screened 237 NCCPs. Of these, initial potential reference to psycho-oncology and survivorship content were identified in 97 plans (41%). In Phase 1, 57/97 (59%) had reference to psycho-oncology or survivorship content within defined criteria. In Phase 2, 27/97 (28%) had little mention of psycho-oncology specifically in survivorship, 47/97 (48%) had some (general or brief) mention, and the remaining 23/97 (24%) had substantial content/specific sections and clearly articulated goals and/or objectives. Common goals for improving psychosocial care in the post-treatment period included building capacity of healthcare professionals, implementing rehabilitation models, and increasing the utilisation of community services. CONCLUSIONS: Most NCCPs did not reference psycho-oncology and only one-quarter contained clear objectives specifically in the post-treatment survivorship phase.

Longitudinal changes of health-related quality of life in childhood chronic kidney disease.

BACKGROUND: Few longitudinal studies have evaluated the impact of chronic kidney disease (CKD) duration on health-related quality of life (HRQOL). The study's aim was to determine how HRQOL changes over time in childhood CKD. METHODS: Study participants were children in the chronic kidney disease in children (CKiD) cohort who completed the pediatric quality of life inventory (PedsQL) on three or more occasions over the course of two or more years. Generalized gamma (GG) mixed-effects models were applied to assess the effect of CKD duration on HRQOL while controlling for selected covariates. RESULTS: A total of 692 children (median age = 11.2) with a median of 8.3 years duration of CKD were evaluated. All subjects had a GFR greater than 15 ml/min/1.73 m2. GG models with child self-report PedsQL data indicated that longer CKD duration was associated with improved total HRQOL and the 4 domains of HRQOL. GG models with parent-proxy PedsQL data indicated that longer duration was associated with better emotional but worse school HRQOL. Increasing trajectories of child self-report HRQOL were observed in the majority of subjects, while parents less frequently reported increasing trajectories of HRQOL. There was no significant relationship between total HRQOL and time-varying GFR. CONCLUSIONS: Longer duration of the disease is associated with improved HRQOL on child self-report scales; however, parent-proxy results were less likely to demonstrate any significant change over time. This divergence could be due to greater optimism and accommodation of CKD in children. Clinicians can use these data to better understand the needs of pediatric CKD patients. A higher resolution version of the Graphical abstract is available as Supplementary information.

Functional impairment is associated with medical debt in male cancer survivors and credit card debt in female cancer survivors.

PURPOSE: To examine the associations of functional limitations with medical and credit card debt among cancer survivor families and explore sex differences in these associations. METHODS: This cross-sectional study used data from the 2019 wave of the Panel Study of Income Dynamics, a nationally representative, population-based survey of individuals and households in the US administered in both English and Spanish and includes all households where either the head of household or spouse/partner reported having been diagnosed with cancer. Participants reported on functional limitations in six instrumental activities of daily living (IADL) and seven activities of daily living (ADL). Functional impairment was categorized as 0, 1-2 and ≥ 3 limitations. Medical debt was defined as self-reported unpaid medical bills. Credit card debt was defined as revolving credit card debt. Multivariable logistic regression analyses were performed. RESULTS: Credit card debt was more common than medical debt (39.8% vs. 7.6% of cancer survivor families). Families of male cancer survivors were 7.3 percentage points more likely to have medical debt and 16.0 percentage points less likely to have credit card debt compared to families of female cancer survivors. Whereas male cancer survivors with increasing levels of impairment were 24.7 percentage point (p-value = 0.006) more likely to have medical debt, female survivors with more functional impairment were 13.6 percentage points (p-value = 0.010) more likely to have credit card debt. CONCLUSIONS: More research on medical and credit card debt burden among cancer survivors with functional limitations is needed.

Moderators of the Effects of mySmartSkin, a Web-Based Intervention to Promote Skin Self-examination and Sun Protection Among Individuals Diagnosed With Melanoma.

BACKGROUND: Identifying the characteristics of persons who benefit more from behavioral interventions can help health care providers decide which individuals should be offered particular interventions because this is the subgroup of persons who are more likely to derive greater benefit from the intervention and refine the underlying constructs of the model guiding the intervention. PURPOSE: This study evaluated possible demographic, medical, knowledge and attitudinal, and psychosocial variables that may moderate the impact of an online intervention, called mySmartSkin (MSS), on engagement in skin self-examination (SSE) and sun protection behaviors among melanoma survivors. METHODS: Participants completed a baseline survey and were then randomized to the MSS condition or usual care. Follow-up surveys were completed by participants at 8-, 24-, and 48-week postrandomization. RESULTS: A greater impact of MSS on SSE was illustrated among participants with more phenotypic skin cancer risk factors and participants reporting lower baseline self-efficacy in conducting SSE. A more favorable response of MSS on sun protection behaviors was shown when initial knowledge about abnormal lesions and sun protection barriers were high. Greater use of MSS and more favorable evaluations of it were also associated with higher intervention response. CONCLUSIONS: Future studies seeking to improve SSE and sun protection among melanoma survivors might benefit from focusing on survivors who report more skin cancer risk factors, lower self-efficacy in conducting SSE, less knowledge about what abnormal skin lesions look like, more perceived barriers to sun protection behaviors, and less worry about recurrence and cancer-related distress.

mySmartCheck, a Digital Intervention to Promote Skin Self-examination Among Individuals Diagnosed With or at Risk for Melanoma: A Randomized Clinical Trial.

BACKGROUND: Regular skin self-examination (SSE) reduces melanoma mortality but is not often conducted. PURPOSE: To promote SSE performance in individuals at increased risk for melanoma. METHODS: One hundred sixteen individuals at heightened risk for development of melanoma (i.e., personal/family history of melanoma, high-risk mole phenotype) who did not conduct a thorough SSE during in the prior 3 months were randomly assigned to receive either an automated internet-based intervention (mySmartCheck) or usual care (UC). One hundred sixteen participants completed surveys before random assignment and 99 completed the follow-up survey 13-weeks afterward. The primary outcome was participant self-reported examination (SSE) of all 15 parts of the body in the last 3 months. Secondary outcomes were SSE of any part of the body in the last 3 months and number of body parts examined during the last SSE. RESULTS: More mySmartCheck participants examined all 15 body parts (32.6% vs. 7.1%, p = .001). More individuals in mySmartCheck reported conducting SSE on any body part than those in UC (81.4% vs. 62.5%, p = .04). Effect sizes were large (d = 1.19 all 15 body parts) to moderate (d = 0.55 for any body part). mySmartCheck participants examined more body areas than UC participants (12.7 vs. 10.3, p = 0.003) during the last SSE. Participants in mySmartCheck reported higher levels of knowledge of suspicious lesions, SSE benefits, SSE self-efficacy, and planning for SSE, and lower SSE barriers, than those assigned to UC. CONCLUSIONS: mySmartCheck had a significant positive impact on SSE performance and behaviors. Additional research with a larger sample size, a longer follow-up, and more varied clinical settings is needed. TRIAL REGISTRATION: ClinicalTrials.gov registration # NCT03725449 (https://clinicaltrials.gov/ct2/show/NCT03725449).

Disparities in HPV vaccine knowledge and adolescent HPV vaccine uptake by parental nativity among diverse multiethnic parents in New Jersey.

BACKGROUND: Suboptimal human papillomavirus (HPV) vaccination rates persist among adolescents in the United States (U.S.). New Jersey (NJ), among the top, most racially/ethnically diverse states in the U.S., had among the lowest HPV vaccine initiation rates, prior to 2018. This study examined parental HPV vaccine knowledge and adolescent HPV vaccine initiation among multiethnic parents in NJ, where access to language concordant HPV vaccine information and vaccination services may differ, for immigrant parents. METHODS: We surveyed parents of adolescents (ages 11-18) at community events in NJ to examine parental HPV vaccine knowledge and adolescent HPV vaccine uptake. Vaccine knowledge was assessed using an 11-item question stem that covered vaccine efficacy, gender recommendation, vaccine protection, and myths. Multivariable models assessed the association of parent nativity on HPV vaccine knowledge scores and adolescent HPV vaccine initiation, controlling for sociodemographic factors. RESULTS: Of the 77 parents, most parents (84%) were aware of the HPV vaccine. However, knowledge scores were low and differed by parent nativity. Non-U.S. born parents had significantly lower knowledge scores - 1.7 [- 3.1, - 0.4] and lower odds of adolescent children initiating the HPV vaccine 0.3 [0.1, 0.9] compared to U.S.-born parents after adjusting demographic characteristics. CONCLUSIONS: Our findings reveal that parental HPV vaccine knowledge remains low among suburban dwelling, immigrant parents, even though they have higher education and access to health care. Multilevel strategies to reduce missed opportunities for HPV vaccine education among parents and HPV vaccination for adolescents are needed, including for suburban, immigrant communities.

Self-efficacy in managing post-treatment care among oral and oropharyngeal cancer survivors.

OBJECTIVE: Physical and psychosocial effects of oral cancer result in long-term self-management needs. Little attention has been paid to survivors' self-efficacy in managing their care. Study goals were to characterise self-care self-efficacy and evaluate socio-demographics, disease, attitudinal factors and psychological correlates of self-efficacy and engagement in head and neck self-exams. METHODS: Two hundred thirty-two oral cancer survivors completed measures of socio-demographics, self-care self-efficacy, head and neck self-exams and attitudinal and psychological measures. Descriptive statistics characterised self-efficacy. Hierarchical regressions evaluated predictors of self-efficacy. RESULTS: Survivors felt moderately confident in the ability to manage self-care (M = 4.04, SD = 0.75). Survivors with more comorbidities (ß = -0.125), less preparedness (ß = 0.241), greater information (ß = -0.191), greater support needs (ß = -0.224) and higher depression (ß = -0.291) reported significantly lower self-efficacy. Head and neck self-exam engagement (44% past month) was relatively low. Higher preparedness (OR = 2.075) and self-exam self-efficacy (OR = 2.606) were associated with more engagement in self-exams. CONCLUSION: Many survivors report low confidence in their ability to engage in important self-care practices. Addressing unmet information and support needs, reducing depressive symptoms and providing skill training and support may boost confidence in managing self-care and optimise regular self-exams.

Survivorship transition care experiences and preparedness for survivorship among a diverse population of cancer survivors in New Jersey.

OBJECTIVES: The aims were (1) to characterise preparedness for survivorship and (2) to evaluate sociodemographic, medical, survivorship care transition experiences (e.g., receiving a survivorship care plan), practical (e.g., cancer-related financial hardships and information needs) and psychological (e.g., fear of recurrence) factors with preparedness for survivorship. METHODS: Three hundred and forty-six residents of Southern New Jersey who were diagnosed in 2015 or 2016 with bladder, breast, gynaecological, colorectal, lung, melanoma, prostate or thyroid cancer were identified and consented by the New Jersey State Cancer Registry. Participants completed a questionnaire assessing preparedness, provider care transition practices, financial hardships, information needs and fear of cancer recurrence. Correlations and multivariate analyses were conducted to identify factors associated with preparedness for survivorship. RESULTS: Participants reported feeling somewhat prepared for survivorship. More than half reported not receiving a written survivorship care plan and many desired more information about follow-up tests, symptoms monitoring and maintaining good nutrition and health. Receipt of chemotherapy, limited transition care planning, limited discussion of medical and psychosocial effects, high information needs and financial hardship were predictors of low preparedness. CONCLUSION: Identifying and addressing factors associated with survivorship preparedness at end of treatment and over cancer survivorship trajectory will foster higher quality survivorship experiences.

Financial hardship among cancer survivors in Southern New Jersey.

PURPOSE: To identify predictors of financial hardship, operationalized as foregoing health care, making financial sacrifices, and being concerned about having inadequate financial and insurance information. METHODS: Cancer survivors (n = 346) identified through the New Jersey State Cancer Registry were surveyed from August 2018 to September 2019. Multivariable logistic regression analyses were performed. RESULTS: Cancer survivors with household incomes less than $50,000 annually were more likely than those earning $50,0000-$90,000 to report foregoing health care (15.8 percentage points, p < 0.05). Compared to retirees, survivors who were currently unemployed, disabled, or were homemakers were more likely to forego doctor's visits (11.4 percentage points, p < 0.05), more likely to report borrowing money (16.1 percentage points, p < 0.01), and more likely to report wanting health insurance information (25.7 percentage points, p < 0.01). Employed survivors were more likely than retirees to forego health care (16.8 percentage points, p < 0.05) and make financial sacrifices (20.0 percentage points, p < 0.01). Survivors who never went to college were 9.8 percentage points (p < 0.05) more likely to borrow money compared to college graduates. Black survivors were more likely to want information about dealing with financial and insurance issues (p < 0.01); men were more likely to forego health care (p < 0.05). CONCLUSION: Findings highlight the role of employment status and suggest that education, income, race, and gender also shape cancer survivors' experience of financial hardship. There is a need to refine and extend financial navigation programs. For employed survivors, strengthening family leave policies would be desirable.

Correlates of sun protection behaviors among melanoma survivors.

BACKGROUND: The study objective was to assess potential correlates of sun protection behaviors among melanoma survivors. METHODS: Participants were 441 melanoma survivors recruited from three health centers and a state cancer registry in the United States. Sun protection behaviors (sunscreen, shade, protective shirts, and hats) were assessed through an online survey, as were potential correlates (demographic, melanoma risk, knowledge and beliefs, psychological and social influence factors). Hierarchical multiple regression analyses were conducted. RESULTS: Correlates of sun protection behaviors included education, skin cancer risk factors, melanoma knowledge and beliefs, melanoma worry and distress, physician recommendation for sun protection, injunctive norms, and pro-protection beliefs (e.g., perceived barriers, self-efficacy). CONCLUSIONS: Future efforts to improve sun safety among melanoma survivors may benefit from targeting individuals with lower education levels, and addressing sun protection social influence, barriers, and self-efficacy.

Relationship communication and the course of psychological outcomes among couples coping with localised prostate cancer.

OBJECTIVE: How couples communicate about cancer is an important predictor of psychological outcomes for men diagnosed with localised prostate cancer and their spouses. We examined the predictive role of disclosure, responsiveness, mutual avoidance, and holding back on depressive symptoms, psychological adjustment, cancer-specific distress, and cancer concerns. METHODS: Eighty-one prostate cancer patients and their spouses completed measures of communication at baseline and measures of four psychological outcomes at baseline, five, 12, and 26 weeks after baseline. Dyadic growth models tested the effects of time and role on each outcome over time. RESULTS: Higher disclosure and responsiveness predicted better psychological outcomes. Less mutual avoidance and holding back predicted poorer psychological outcomes. Across communication variables, individuals who engaged in poorer communication initially had poorer psychological outcomes that improved over time, whereas individuals who engaged in better communication initially maintained their more positive standing without change or changed in the positive direction. For all outcomes, those with better communication still had better psychological outcomes at six months. CONCLUSION: Couples' cancer-specific relationship communication predicts their psychological outcomes. More research is needed to identify effective interventions, including a longer therapy course, individual communication training, or greater focus on addressing barriers to sharing and responsiveness.

Culturally-adapted behavioral intervention to improve colorectal cancer screening uptake among foreign-born South Asians in New Jersey: the Desi Sehat trial.

Objectives: Colorectal cancer (CRC) is the third most common cancer among Americans of South Asian (SA) descent and is a significant public health concern in SA communities. Rates of screening compliance among foreign-born SAs are very low. The goal of this study was to report on the development, acceptability, and preliminary impact of a culturally-targeted 1:1 intervention delivered in English, Hindi, and Urdu, called Desi-Sehat.Design: Ninety-three foreign-born SAs between the ages of 50 and 75 were recruited using community-based organization methods. Participants completed a baseline survey, participated in a 1:1 session with a community health educator, and a follow-up survey was administered four months after the baseline.Results: The acceptance rate was moderate (52.8%). Attendance at the intervention session was high. More than half of the population did not complete the follow-up survey (58.7%). Participant evaluations of the intervention were high. Intent-to-treat analyses indicate a 30% four month follow-up CRC screening uptake. There were significant increases in knowledge and significant reductions in perceived barriers to screening, worry about CRC screening tests, and worry about CRC. Effect sizes for significant changes were in the medium to large range.Conclusions: Desi Sehat was a well-evaluated and participation in the session was high, participant knowledge significantly increased, and screening barriers, worry about CRC, and worry about CRC screening tests declined significantly. Future studies should focus on enhancing recruitment and retention and include a randomized control design.

Family Attitudes and Communication about Sun Protection and Sun Protection Practices among Young Adult Melanoma Survivors and Their Family Members.

Young melanoma survivors and their family are at increased risk for developing melanoma, but seldom engage in sun protection behaviors. Little is known about the role of family factors in sun protection. Our goals were: 1) examine correspondence between survivors and family sun protection, individual attitudes, and family attitudes and communication about risk-reducing behaviors, and; 2) evaluate the mediating role of family attitudes and communication in the association between individual sun protection attitudes and behavior. Measures of individual attitudes, family attitudes and communication, and sun protection behaviors were completed by 529 participants. Multilevel modeling assessed family correspondence in sun-related attitudes and behaviors and mediation. Families had varying levels of shared attitudes and behaviors, with higher correspondence for family norms. Survivors reported stronger family norms, greater family benefits, and more discussion than siblings. For both sexes, family discussion was associated with higher sun protection. For women only, more favorable attitudes were associated with sun protection partly because women discussed sun protection with family and held stronger norms. Because families' attitudes and practices correspond, family-focused interventions may prove effective. Among females, increasing risk awareness and sunscreen efficacy and overcoming barriers may foster enhanced normative standards, communication about, and engagement in sun protection.

A Population Health Equity Approach Reveals Persisting Disparities in Colorectal Cancer Screening in New York City South Asian Communities.

To assess colorectal cancer (CRC) screening among South Asians (SAs) and explore the challenges and facilitators to CRC screening among SA subgroups in New York City (NYC). Fifty-one semi-structured in-depth interviews and surveys were conducted among SA immigrants in NYC. Qualitative results suggested challenges to CRC screening were related to socio-cultural factors, such as a lack of knowledge on CRC and CRC screening, and structural factors, such as cost and language. A physician referral was the most cited facilitator to CRC screening. Participants reported culturally and linguistically adapted education and information on CRC and CRC screening would help to overcome noted challenges. Our findings support the development of targeted, linguistically and culturally adapted campaigns for this population that facilitate access to health systems and leverage natural community assets and social support systems.

Feasibility of FitSurvivor: A technology-enhanced group-based fitness intervention for adolescent and young adult survivors of childhood cancer.

BACKGROUND: This study evaluated the feasibility of a technology-enhanced group-based fitness intervention for adolescent and young adult (AYA) survivors of childhood cancer. PROCEDURE: AYA survivors ages 13-25 years were randomized to the intervention (eight in-person group sessions with mobile app and FitBit followed by 4 weeks of app and FitBit only) or waitlist control. Assessments were at 0, 2, 3, 6, and 9 months. Feasibility was evaluated by enrollment, retention, attendance, app engagement, and satisfaction. Secondary outcomes included physical activity, muscular strength/endurance, cardiorespiratory fitness, health-related quality of life, and fatigue. RESULTS: A total of 354 survivors were mailed participation letters; 68 (19%) were screened, of which 56 were eligible and 49 enrolled (88% of those screened eligible, 14% of total potentially eligible). Forty-nine survivors (Mage  = 18.5 years, 49% female) completed baseline assessments and were randomized (25 intervention, 24 waitlist). Thirty-seven (76%) completed the postintervention assessment and 32 (65%) completed the final assessment. On average, participants attended 5.7 of eight sessions (range 1-8). Overall intervention satisfaction was high (M = 4.3, SD = 0.58 on 1-5 scale). Satisfaction with the companion app was moderately high (M = 3.4, SD = 0.97). The intervention group demonstrated significantly greater improvement in lower body muscle strength compared to the waitlist postintervention, and small but not statistically significant changes in other secondary measures. CONCLUSIONS: A group-based intervention with a mobile app and fitness tracker was acceptable but has limited reach due to geographical barriers and competing demands experienced by AYA survivors.

A longitudinal analysis of the effect of anemia on health-related quality of life in children with mild-to-moderate chronic kidney disease.

BACKGROUND: To evaluate impact of anemia on health-related quality of life (HRQOL) over time in a large pediatric cohort with mild-to-moderate chronic kidney disease (CKD). METHODS: Participants were enrolled in the Chronic Kidney Disease in Children Study (CKiD), a multicenter, longitudinal cohort. HRQOL was measured using the Pediatric Quality of Life Inventory (PedsQL). Anemia was defined as hemoglobin < 5th percentile for age, sex, and race. Two longitudinal analyses were conducted on consecutive visit pairs. Models examined effects of anemia status on both HRQOL score over time and change in HRQOL score between consecutive visits. The sample included 733 children with a median estimated GFR 54 ml/min/1.73 m2. Thirty percent of children had anemia at index visit. RESULTS: Analysis of HRQOL scores revealed the presence of anemia was associated with significantly lower overall HRQOL (ß = - 2.90 (95% CI = - 7.74, - 0.21), p = 0.04) and physical functioning (ß = - 5.72 (- 9.49, - 2.25), p = 0.001) according to children. On parent ratings, the development of anemia was associated with lower emotional functioning scores (ß = - 4.87 (- 8.72, - 0.11), p = 0.045). In the second model, children who developed anemia were rated by caregivers as having more decreased physical functioning than children who remained anemia-free (ß = - 3.30 per year (- 5.83, - 0.76), p = 0.01). Caregivers did not observe declines in their children's other PedsQL subscales in the presence of developed anemia. Children with resolved or persistence did not show improvement or decline in any aspect of HRQOL functioning relative to non-anemic subjects. CONCLUSIONS: In children with CKD, anemia has an adverse effect on HRQOL which persists over time but does not appear to be progressive.

Longitudinal course and predictors of communication and affect management self-efficacy among women newly diagnosed with gynecological cancers.

OBJECTIVE: Self-efficacy is an important psychological resource to assist people in managing chronic illness and has been associated with psychological outcomes among patients coping with cancer. Little is known about the course of self-efficacy among gynecological cancer patients coping with cancer and the sociodemographic, medical, and psychological factors that are associated with the course of self-efficacy among these patients. METHODS: One hundred twenty-five women recently diagnosed with gynecological cancer completed a measure of communication and affective management self-efficacy at baseline, 5 weeks, 9 weeks, 6 months, 1 year, and 18 months post-baseline. Participants also completed measures of functional impairment, holding back, perceived unsupportive behaviors of family and friends, emotional expressivity, cancer concerns, depressive symptoms, cancer-specific intrusions and avoidance, problem-solving, and positive reappraisal coping. RESULTS: Growth curve modeling suggested that women varied considerably in their average reports of self-efficacy and varied with regard to their linear trajectories of self-efficacy over time. Average affect management self-efficacy increased significantly over time. Greater functional impairment, more holding back, more unsupportive responses from friends and family, less emotional expressivity, more cancer concerns, depression, intrusions, or avoidance predicted lower average self-efficacy over time. Women who were less emotionally expressive or held back sharing concerns less reported lower self-efficacy which increased over time. CONCLUSIONS: It will be important for providers to identify gynecological cancer patients who report low ability to communicate feelings and needs and manage emotional reactions to cancer and offer them interventions which bolster self-efficacy.

Recruitment Strategies for Nurse Enrollment in an Online Study.

BACKGROUND: Although there is a great deal of literature regarding effective recruitment and challenges of recruiting specific patient populations, there is less known about best practices for recruitment of nurses as study subjects. OBJECTIVES: The purpose of this article is to report our experience with recruitment and retention for a randomized trial of an online educational program to prepare oncology nurses to discuss oncology clinical trials with patients. METHODS: The study population included currently employed oncology nurses with direct patient interaction. There were three phases of this study: (1) qualitative interviews, (2) a pilot test, and (3) the randomized trial. Phase 3 was rolled out in five waves of recruitment. The distinct phases of the study-and the gradual roll out of recruitment during Phase 3-allowed us to test and refine our recruitment and retention methods for the randomized trial. Upon analysis of our response rate and attrition after the first wave of recruitment in Phase 3, we made several changes to improve recruitment and retention, including adding incentives, shortening the survey, and increasing the number of reminders to complete the program. RESULTS: The response rate was higher when we used both e-mail and U.S. postal mail solicitations. After the first wave of recruitment in the final phase, changes in our strategies did not increase our overall response rate significantly; however, the rate of attrition following baseline declined. DISCUSSION: Recruitment planning is an important component of successful clinical research. The use of the Internet for both recruitment of subjects and testing of interventions remains a cost-effective and potentially high yield methodology. Our research demonstrated several successful approaches to yield increased participation and retention of subjects, including seeking formal relationships with professional organizations as sponsors or supporters, providing meaningful incentives to participants, keeping surveys or questionnaires as short as possible, and planning multiple follow-up contacts from the outset.