Symptom burden and quality of life among patient and family caregiver dyads in advanced cancer.

PURPOSE: Symptom management among patients diagnosed with advanced cancer is a high priority in clinical care that often involves the support of a family caregiver. However, limited studies have examined parallel patient and caregiver symptom burden and associations with their own and each other's quality of life (QOL). This study seeks to identify patient and caregiver symptom clusters and investigate associations between identified clusters and demographic, clinical, and psychosocial factors (cognitive appraisals and QOL). METHODS: This study was a secondary analysis of self-reported baseline survey data collected from a randomized clinical trial of 484 adult advanced cancer patients and their caregivers. Latent class analysis and factor analysis were used to identify symptom clusters. Bivariate statistics tested associations between symptom clusters and demographic, clinical, and psychosocial variables. RESULTS: The most prevalent symptom for patients was energy loss/fatigue and for caregivers, mental distress. Low, moderate, and high symptom burden subgroups were identified at the patient, caregiver, and dyad level. Age, gender, race, income, chronic conditions, cancer type, and treatment type were associated with symptom burden subgroups. Higher symptom burden was associated with more negative appraisals of the cancer and caregiving experience, and poorer QOL (physical, social, emotional, functional, and overall QOL). Dyads whose caregivers had more chronic conditions were more likely to be in the high symptom burden subgroup. CONCLUSION: Patient and caregiver symptom burden influence their own and each other's QOL. These findings reinforce the need to approach symptom management from a dyadic perspective.

Illness uncertainty and quality of life in patients with advanced cancer and their family caregivers: An actor-partner interdependence model analysis.

OBJECTIVE: The relationship between illness uncertainty and quality of life (QOL) has been examined for either the patient or caregiver, but not among the patient-caregiver dyads. This study examined relationships between illness uncertainty and QOL among patients with advanced cancer and family caregivers. METHODS: We conducted a secondary analysis of data from a randomized clinical trial that examined the effects of a dyadic-based intervention on psychological outcomes for patients with advanced cancer and family caregivers (N = 484 dyads). Illness uncertainty and QOL were measured using the shorten version of the Mishel Uncertainty in Illness Scale for Adult and the Functional Assessment of Cancer Therapy, respectively. The actor-partner interdependence model was used to examine whether an individual's uncertainty (either a patient's or caregiver's) was associated with their own QOL (i.e., an actor effect) and/or their partner's QOL (i.e., a partner effect). RESULTS: Significant actor effects included a negative association between patients' uncertainty and their own QOL (b = -0.422; p < 0.001) and a negative association between caregivers' uncertainty and their own QOL (b = -0.408; p < 0.001). In terms of partner effects, patients' uncertainty was negatively associated with caregivers' QOL (b = -0.095; p < 0.01). No partner effect was found for caregivers, suggesting that caregivers' uncertainty was not related to patients' QOL. CONCLUSIONS: Study findings support targeted interventions offered to both patients and their family caregivers to manage their illness uncertainty and improve their QOL.

TrueNTH Sexual Recovery Intervention for couples coping with prostate cancer: Randomized controlled trial results.

BACKGROUND: Despite significant sexual dysfunction and distress after localized prostate cancer treatment, patients typically receive only physiologic erectile dysfunction management. The authors performed a randomized controlled trial of an online intervention supporting couples' posttreatment recovery of sexual intimacy. METHODS: Patients treated with surgery, radiation, or combined radiation and androgen deprivation therapy who had partners were recruited and randomized to an online intervention or a control group. The intervention, tailored to treatment type and sexual orientation, comprised 6 modules addressing expectations for sexual and emotional sequelae of treatment, rehabilitation, and guidance toward sexual intimacy recovery. Couples, recruited from 6 sites nationally, completed validated measures at the baseline and 3 and 6 months after treatment. Primary outcome group differences were assessed with t tests for individual outcomes. RESULTS: Among 142 randomized couples, 105 patients (mostly surgery) and 87 partners completed the 6-month survey; this reflected challenges with recruitment and attrition. There were no differences between the intervention and control arms in Patient-Reported Outcomes Measurement Information System Global Satisfaction With Sex Life scores 6 months after treatment (the primary outcome). Three months after treatment, intervention patients and partners reported more engagement in penetrative and nonpenetrative sexual activities than controls. More than 73% of the intervention participants reported high or moderate satisfaction with module content; more than 85% would recommend the intervention to other couples. CONCLUSIONS: Online psychosexual support for couples can help couples to connect and experience sexual pleasure early after treatment despite patients' sexual dysfunction. Participants' high endorsement of the intervention reflects the importance of sexual health support to couples after prostate cancer treatment. LAY SUMMARY: This study tested a web-based program supporting couples' sexual recovery of sexual intimacy after prostate cancer treatment. One hundred forty-two couples were recruited and randomly assigned to the program (n = 60) or to a control group (n = 82). The program did not result in improvements in participants' satisfaction with their sex life 6 months after treatment, but couples in the intervention group engaged in sexual activity sooner after treatment than couples in the control group. Couples evaluated the program positively and would recommend it to others facing prostate cancer treatment.

Guidelines for Sexual Health Care for Prostate Cancer Patients: Recommendations of an International Panel.

BACKGROUND: Patients with prostate cancer suffer significant sexual dysfunction after treatment which negatively affects them and their partners psychologically, and strain their relationships. AIM: We convened an international panel with the aim of developing guidelines that will inform clinicians, patients and partners about the impact of prostate cancer therapies (PCT) on patients' and partners' sexual health, their relationships, and about biopsychosocial rehabilitation in prostate cancer (PC) survivorship. METHODS: The guidelines panel included international expert researchers and clinicians, and a guideline methodologist. A systematic review of the literature, using the Ovid MEDLINE, Scopus, CINAHL, PsychINFO, LGBT Life, and Embase databases was conducted (1995-2022) according to the Cochrane Handbook for Systematic Reviews of Interventions. Study selection was based on Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Each statement was assigned an evidence strength (A-C) and a recommendation level (strong, moderate, conditional) based on benefit/risk assessment, according to the nomenclature of the American Urological Association (AUA). Data synthesis included meta-analyses of studies deemed of sufficient quality (3), using A Measurement Tool to Assess Systematic Reviews (AMSTAR). OUTCOMES: Guidelines for sexual health care for patients with prostate cancer were developed, based on available evidence and the expertise of the international panel. RESULTS: The guidelines account for patients' cultural, ethnic, and racial diversity. They attend to the unique needs of individuals with diverse sexual orientations and gender identities. The guidelines are based on literature review, a theoretical model of sexual recovery after PCT, and 6 principles that promote clinician-initiated discussion of realistic expectations of sexual outcomes and mitigation of sexual side-effects through biopsychosocial rehabilitation. Forty-seven statements address the psychosexual, relationship, and functional domains in addition to statements on lifestyle modification, assessment, provider education, and systemic challenges to providing sexual health care in PC survivorship. CLINICAL IMPLICATIONS: The guidelines provide clinicians with a comprehensive approach to sexual health care for patients with prostate cancer. STRENGTHS & LIMITATIONS: The strength of the study is the comprehensive evaluation of existing evidence on sexual dysfunction and rehabilitation in prostate cancer that can, along with available expert knowledge, best undergird clinical practice. Limitation is the variation in the evidence supporting interventions and the lack of research on issues facing patients with prostate cancer in low and middle-income countries. CONCLUSION: The guidelines document the distressing sexual sequelae of PCT, provide evidence-based recommendations for sexual rehabilitation and outline areas for future research. Wittmann D, Mehta A, McCaughan E, et al. Guidelines for Sexual Health Care for Prostate Cancer Patients: Recommendations of an International Panel. J Sex Med 2022;19:1655-1669.

Systematic translation and adaptation of the FOCUS program, a USA-based supportive intervention for persons with cancer and their family caregivers, for use in six European countries.

PURPOSE: Having advanced cancer presents many challenges for patients and family caregivers. The FOCUS program is a psychoeducational nurse-led intervention, developed in the USA, to support dyads of patients with cancer and their family caregivers to live with the illness. The program includes a conversation manual and information resources for dyads. We aimed to develop a version of the program for dyads facing advanced cancer in six European countries. METHOD: The Participatory and Iterative Process Framework for Language Adaptation (PIPFLA) was used to guide the translation of the program to the local contexts of Belgium, Denmark, Ireland, Italy, the Netherlands, and the UK. In several rounds, potential program users (e.g., nurses, clinicians, patients, family caregivers) and researchers from all six countries reviewed program materials and advised on adaptations. RESULTS: The PIPFLA process resulted in one European version of the program in different languages (FOCUS +). The FOCUS + conversation manual is uniform across all countries. The main adaptations included additional attention to both family caregiver and patient needs; more emphasis on self-management, advance care planning, and shared responsibilities; discussing the dyad's outlook rather than optimism; addressing the role of nurses as educational rather than therapeutic; and more suggestions to refer dyads to health care professionals for specific care needs. The information resources for dyads were adapted to fit with local contexts. CONCLUSION: The PIPFLA methodology is an efficient and effective framework to thoroughly translate and culturally adapt a complex USA-based program for use in six European countries in collaboration with end users.

Symptom distress and quality of life among Black Americans with cancer and their family caregivers.

OBJECTIVE: Black Americans are disproportionately affected by cancer and chronic diseases. Black patients with cancer and their family caregivers may concurrently experience symptoms that influence their wellbeing. This study investigates the influence of mental and physical symptom distress on quality of life (QOL) among Black Americans with cancer and their family caregivers from a dyadic perspective. METHODS: One hundred and fifty-one dyads comprised of a Black American with breast, colorectal, lung or prostate cancer and a Black family caregiver were included in this secondary analysis of pooled baseline data from three studies. Self-reports of problems managing 13 symptoms were used to measure mental and physical symptom distress. Descriptive statistics and the actor-partner interdependence model were used to examine symptom prevalence and the influence of each person's symptom distress on their own and each other's QOL. RESULTS: Fatigue, sleep problems, pain and mental distress were prevalent. Patients and caregivers reported similar levels of mental distress; however, patients reported higher physical distress. Increased patient mental distress was associated with decreased patient QOL (overall, emotional, social, functional). Increased patient physical distress was associated with decreased patient QOL (overall, physical, emotional, functional) and decreased caregiver emotional wellbeing. Increased caregiver mental distress was associated with decreased caregiver QOL (overall, emotional, social, functional) and decreased patient overall QOL. Increased caregiver physical distress was associated with decreased caregiver QOL (overall, physical, functional), decreased patient emotional wellbeing, and better patient social wellbeing. CONCLUSIONS: Supporting symptom management in Black patient/caregiver dyads may improve their QOL.

Effectiveness of a nurse-delivered (FOCUS+) and a web-based (iFOCUS) psychoeducational intervention for people with advanced cancer and their family caregivers (DIAdIC): study protocol for an international randomized controlled trial.

BACKGROUND: Worldwide, millions of people with advanced cancer and their family caregivers are experiencing physical and psychological distress. Psychosocial support and education can reduce distress and prevent avoidable healthcare resource use. To date, we lack knowledge from large-scale studies on which interventions generate positive outcomes for people with cancer and their informal caregivers' quality of life. This protocol describes the DIAdIC study that will evaluate the effectiveness of two psychosocial and educational interventions aimed at improving patient-family caregiver dyads' emotional functioning and self-efficacy. METHODS: We will conduct an international multicenter three-arm randomized controlled trial in Belgium, Denmark, Ireland, Italy, The Netherlands, and the United Kingdom. In each country, 156 dyads (936 in total) of people with advanced cancer and their family caregiver will be randomized to one of the study arms: 1) a nurse-led face-to-face intervention (FOCUS+), 2) a web-based intervention (iFOCUS) or 3) a control group (care as usual). The two interventions offer tailored psychoeducational support for patient-family caregiver dyads. The nurse-led face-to-face intervention consists of two home visits and one online video session and the web-based intervention is completed independently by the patient-family caregiver dyad in four online sessions. The interventions are based on the FOCUS intervention, developed in the USA, that addresses five core components: family involvement, optimistic outlook, coping effectiveness, uncertainty reduction, and symptom management. The FOCUS intervention will be adapted to the European context. The primary outcomes are emotional functioning and self-efficacy of the patient and the family caregiver, respectively. The secondary outcomes are quality of life, benefits of illness, coping, dyadic communication, and ways of giving support of the patient and family caregiver. DISCUSSION: DIAdIC aims to develop cost-effective interventions that integrate principles of early palliative care into standard care. The cross-country setup in six European countries allows for comparison of effectiveness of the interventions in different healthcare systems across Europe. By focusing on empowerment of the person with cancer and their family caregiver, the results of this RCT can contribute to the search for cost-effective novel interventions that can relieve constraints on professional healthcare. TRIAL REGISTRATION: Registration on ClinicalTrials.gov on 12/11/2020, identifier NCT04626349 . DATE AND VERSION IDENTIFIER: 20211209_DIAdIC_Protocol_Article.

Moderators of the effect of psychosocial interventions on fatigue in women with breast cancer and men with prostate cancer: Individual patient data meta-analyses.

OBJECTIVE: Psychosocial interventions can reduce cancer-related fatigue effectively. However, it is still unclear if intervention effects differ across subgroups of patients. These meta-analyses aimed at evaluating moderator effects of (a) sociodemographic characteristics, (b) clinical characteristics, (c) baseline levels of fatigue and other symptoms, and (d) intervention-related characteristics on the effect of psychosocial interventions on cancer-related fatigue in patients with non-metastatic breast and prostate cancer. METHODS: Data were retrieved from the Predicting OptimaL cAncer RehabIlitation and Supportive care (POLARIS) consortium. Potential moderators were studied with meta-analyses of pooled individual patient data from 14 randomized controlled trials through linear mixed-effects models with interaction tests. The analyses were conducted separately in patients with breast (n = 1091) and prostate cancer (n = 1008). RESULTS: Statistically significant, small overall effects of psychosocial interventions on fatigue were found (breast cancer: ß = -0.19 [95% confidence interval (95%CI) = -0.30; -0.08]; prostate cancer: ß = -0.11 [95%CI = -0.21; -0.00]). In both patient groups, intervention effects did not differ significantly by sociodemographic or clinical characteristics, nor by baseline levels of fatigue or pain. For intervention-related moderators (only tested among women with breast cancer), statistically significant larger effects were found for cognitive behavioral therapy as intervention strategy (ß = -0.27 [95%CI = -0.40; -0.15]), fatigue-specific interventions (ß = -0.48 [95%CI = -0.79; -0.18]), and interventions that only targeted patients with clinically relevant fatigue (ß = -0.85 [95%CI = -1.40; -0.30]). CONCLUSIONS: Our findings did not provide evidence that any selected demographic or clinical characteristic, or baseline levels of fatigue or pain, moderated effects of psychosocial interventions on fatigue. A specific focus on decreasing fatigue seems beneficial for patients with breast cancer with clinically relevant fatigue.

Psychometric properties of the FACT-G quality of life scale for family caregivers of cancer patients.

PURPOSE: This study aimed to examine psychometric properties of a caregiver version of the well-established Functional Assessment of Cancer Therapy-General Scale (FACT-G) after conducting focus groups and obtaining expert input. METHODS: We made minor wording modifications to the Patient FACT-G to enable caregivers to report how the illness affected their overall quality of life (QOL) and well-being on four subscales (physical, social, emotional, functional). We tested the acceptability, precision, factor structure, reliability and validity of the Caregiver FACT-G among partners of prostate cancer patients (N = 263) and caregivers (spouses, siblings, adult children) of patients with advanced cancer (breast, lung, colorectal, prostate) (N = 484) using data from two Randomized Clinical Trials (RCTs). RESULTS: With a factor structure similar to the Patient FACT-G, Caregiver FACT-G was acceptable and precise in measuring caregiver QOL, with high inter-factor correlations and internal consistency reliability (Cronbach's alphas 0.81-0.91). The Caregiver FACT-G had strong convergent validity demonstrated by significant positive correlations with caregiver self-efficacy (0.25-0.63), dyadic communication (0.18-0.51), and social support (0.18-0.54) in both samples. It also had strong discriminant validity evidenced by significant inverse correlations with negative appraisal of caregiving (- 0.37 to - 0.69), uncertainty (- 0.28 to - 0.53), hopelessness (- 0.25 to - 0.60), and avoidant coping (- 0.26 to - 0.58) in both samples. Caregivers' baseline FACT-G scores were significantly associated with their physical (0.23) and mental well-being (0.54; 4-month follow-up) and their depression (- 0.69; 3-month follow-up), indicating strong predictive validity. CONCLUSION: This is the first study evaluating the psychometric properties of the Caregiver FACT-G. More psychometric testing is warranted, especially among caregivers of diverse sociocultural backgrounds.

Disparities in genetic services utilization in a random sample of young breast cancer survivors.

PURPOSE: Increasing use of genetic services (counseling/testing) among young breast cancer survivors (YBCS) can help decrease breast cancer incidence and mortality. The study examined use of genetic services between Black and White/Other YBCS, attitudes and knowledge of breast cancer risk factors, and reasons for disparities in using genetic services. METHODS: We used baseline data from a randomized control trial including a population-based, stratified random sample of 3000 potentially eligible YBCS, with oversampling of Black YBCS. RESULTS: Among 883 YBCS (353 Black, 530 White/Other) were significant disparities between the two racial groups. More White/Other YBCS had received genetic counseling and had genetic testing than Blacks. Although White/Other YBCS resided farther away from board-certified genetic counseling centers, they had fewer barriers to access these services. Black race, high out-of-pocket costs, older age, and more years since diagnosis were negatively associated with use of genetic services. Black YBCS had lower knowledge of breast cancer risk factors. Higher education and genetic counseling were associated with higher genetic knowledge. CONCLUSION: Racial inequalities of cost-related access to care and education create disparities in genetic services utilization. System-based interventions that reduce socioeconomic disparities and empower YBCS with genetic knowledge, as well as physician referrals, can increase access to genetic services.

Surveillance for cancer recurrence in long-term young breast cancer survivors randomly selected from a statewide cancer registry.

PURPOSE: This study examined clinical breast exam (CBE) and mammography surveillance in long-term young breast cancer survivors (YBCS) and identified barriers and facilitators to cancer surveillance practices. METHODS: Data collected with a self-administered survey from a statewide, randomly selected sample of YBCS diagnosed with invasive breast cancer or ductal carcinoma in situ younger than 45 years old, stratified by race (Black vs. White/Other). Multivariate logistic regression models identified predictors of annual CBEs and mammograms. RESULTS: Among 859 YBCS (n = 340 Black; n = 519 White/Other; mean age = 51.0 ± 5.9; diagnosed 11.0 ± 4.0 years ago), the majority (> 85%) reported an annual CBE and a mammogram. Black YBCS in the study were more likely to report lower rates of annual mammography and more barriers accessing care compared to White/Other YBCS. Having a routine source of care, confidence to use healthcare services, perceived expectations from family members and healthcare providers to engage in cancer surveillance, and motivation to comply with these expectations were significant predictors of having annual CBEs and annual mammograms. Cost-related lack of access to care was a significant barrier to annual mammograms. CONCLUSIONS: Routine source of post-treatment care facilitated breast cancer surveillance above national average rates. Persistent disparities regarding access to mammography surveillance were identified for Black YBCS, primarily due to lack of access to routine source of care and high out-of-pocket costs. IMPLICATIONS: Public health action targeting cancer surveillance in YBCS should ensure routine source of post-treatment care and address cost-related barriers. Clinical Trials Registration Number: NCT01612338.

Predictors of quality of life and depression among Korean-American cancer patients and their family caregivers.

OBJECTIVE: This study examined social, cultural, and appraisal factors associated with Korean-American cancer patients' and their family caregivers' quality of life (QOL) and depression. METHODS: Data were from Korean-American cancer patients and their family caregivers (N = 60 dyads) living in the United States. Study aims were examined using descriptive statistics and multiple regression. RESULTS: For patients, higher social support and lower negative appraisal of illness predicted higher patient QOL; negative appraisal of illness also predicted higher patient depression. For caregivers, older age, having fewer traditional Korean values, and more modern (individualistic) values predicted higher caregiver QOL. Caregivers who held more modern values also had less depression. CONCLUSIONS: Higher support and less negative appraisal predicted better QOL in patients. For caregivers however, the type of cultural values they held (tradition or modern) was a key factor that predicted level of QOL and depression. Assessment of support and appraisal as well as attention to cultural values may enhance their QOL and reduce depression.

Construct Validity of the Multi-Source Interference Task to Examine Attention in Heart Failure.

BACKGROUND: Patients with heart failure (HF) are at risk of cognitive dysfunction, including decreased directed attention. Directed attention is critical for performing daily activities including HF self-care by facilitating one to follow instructions or train-of-thought when there are interferences in which presented stimuli are in conflict with one another. The Multi-Source Interference Task (MSIT) is a computerized neuropsychological test that examines the function of the dorsal anterior cingulate cortex, the neurological substrate for directed attention. However, the MSIT has not been used in past HF studies. OBJECTIVE: The purpose of the study was to examine construct validity of the MSIT in HF. METHODS: Baseline data were obtained from a cognitive intervention study among patients with HF (n = 22) and age- and education-matched healthy adults (n = 20). Construct validity was evaluated using t tests to examine differences between patients with HF and healthy adults and congruent and incongruent MSIT trials. Pearson's correlations were computed to examine relationships between the MSIT and Trail-Making Test, Stroop Test, and Attentional Function Index. RESULTS: Compared with healthy adults, patients with HF demonstrated worse performance (i.e., slower response times and higher error rates) on MSIT. Patients with HF had worse performance on MSIT incongruent trials than congruent trials. Interference z scores of MSIT did not correlate with Trail-Making Tests A and B and Stroop Test interference z scores, but the MSIT interference z scores correlated with perceived attention function measured by Attentional Function Index. DISCUSSION: Construct validity of the MSIT was supported, in part, among patients with HF. The MSIT is a sensitive measure of detecting worse directed attention among patients with HF compared with healthy adults. The preliminary findings support the use of the MSIT as a measure of directed attention in HF. Confirmation is warranted for current findings in larger samples.

Evaluating a psychosocial intervention for men with prostate cancer and their partners: Outcomes and lessons learned from a randomized controlled trial.

AIM: This study evaluated the process and outcome of a psychosocial intervention for men with prostate cancer and their partners. As more men survive prostate cancer, they and their partners need help and support to help them cope with the physical and psychosocial effects of the disease and treatment. There is a lack of psychosocial interventions for men with prostate cancer and their partners. METHODS: A randomized controlled trial was conducted with 34 participants to measure the effects of the intervention on selected psychosocial outcomes, post-intervention and at one month' follow-up. The nine-week program (CONNECT) consisted of three group and two telephone sessions. It focused on symptom management, sexual dysfunction, uncertainty management, positive thinking and couple communication. The outcomes, measured by validated tools were: self-efficacy, quality of life, symptom distress, communication, uncertainty and illness benefits. RESULTS: The men in the intervention group did better on two outcomes (communication and support) than controls. Partners in the intervention group did better than controls on most outcomes. Less participants than expected participated in the trial. The reasons for non-participation included partners not wishing to participate, men not interested in group work, and not understanding the core purpose of the intervention. The cost of training facilitators and for delivering the intervention appeared to be low. CONCLUSION: The knowledge generated from this study will be beneficial for all those grappling with the challenges of developing, implementing and evaluating complex psychosocial interventions. This study has also highlighted the difficulties in recruiting men and their partners in clinical trials.

Recruiting families at risk for hereditary breast and ovarian cancer from a statewide cancer registry: a methodological study.

PURPOSE: Cancer genetic services (counseling/testing) are recommended for women diagnosed with breast cancer younger than 45 years old (young breast cancer survivors-YBCS) and at-risk relatives. We present recruitment of YBCS, identification and recruitment of at-risk relatives, and YBCS willingness to contact their cancer-free, female relatives. METHODS: A random sample of 3,000 YBCS, stratified by race (Black vs. White/Other), was identified through a population-based cancer registry and recruited in a randomized trial designed to increase use of cancer genetic services. Baseline demographic, clinical, and family characteristics, and variables associated with the Theory of Planned Behavior (TPB) were assessed as predictors of YBCS' willingness to contact at-risk relatives. RESULTS: The 883 YBCS (33.2% response rate; 40% Black) who returned a survey had 1,875 at-risk relatives and were willing to contact 1,360 (72.5%). From 853 invited at-risk relatives (up to two relatives per YBCS), 442 responded (51.6% response rate). YBCS with larger families, with a previous diagnosis of depression, and motivated to comply with recommendations from family members were likely to contact a greater number of relatives. Black YBCS were more likely to contact younger relatives and those living further than 50 miles compared to White/Other YBCS. CONCLUSION: It is feasible to recruit diverse families at risk for hereditary cancer from a population-based cancer registry. This recruitment approach can be used as a paradigm for harmonizing processes and increasing internal and external validity of large-scale public health genomic initiatives in the era of precision medicine.

The relationship between illness representations, risk perception and fear of cancer recurrence in breast cancer survivors.

OBJECTIVE: Fear of cancer recurrence, although distinct from distress continues to be under-evaluated, captured, or treated when standard distress scales are used to assess concerns of cancer survivors. We tested a model assessing the association of demographic and clinical factors, illness representations, and perceived risk with fear of cancer recurrence in breast cancer survivors. METHODS: We recruited 117 breast cancer survivors at least one year after completing breast cancer treatment from Internet discussion boards for this cross-sectional, descriptive, correlational study. Participants completed a survey that assessed their level of fear of cancer recurrence as well as their illness representations, perceived risk of recurrence, and demographic and medical characteristics. RESULTS: Our model explained 62% of the variance in fear of cancer recurrence. Emotional representations (ß = .46, p < .01), symptom attribution (ß = .21, p < .01), timeline (ß = .23, p < .01), and consequences (ß = .16, p < .03) were significantly related to fear of recurrence. By contrast, the majority of clinical and demographic variables were not significant contributors to fear of recurrence. CONCLUSIONS: Upon completion of cancer treatment, survivors with more emotional representations of the experience and those who attribute unrelated symptoms to their breast cancer have a higher level of fear of recurrence. Evaluation of these factors during treatment may help mitigate fear of recurrence in the survivorship phase of the breast cancer trajectory. Copyright © 2016 John Wiley & Sons, Ltd.

Meaning-based coping, chronic conditions and quality of life in advanced cancer & caregiving.

OBJECTIVE: This study examined the relationship between the number of co-existing health problems (patient comorbidities and caregiver chronic conditions) and quality of life (QOL) among patients with advanced cancer and their caregivers and assessed the mediating and moderating role of meaning-based coping on that relationship. METHODS: Data came from patients with advanced cancers (breast, colorectal, lung, and prostate) and their family caregivers (N = 484 dyads). Study hypotheses were examined with structural equation modeling using the actor-partner interdependence mediation model. Bootstrapping and model constraints were used to test indirect effects suggested by the mediation models. An interaction term was added to the standard actor-partner interdependence model to test for moderation effects. RESULTS: More patient comorbidities were associated with lower patient QOL. More caregiver chronic conditions were associated with lower patient and caregiver QOL. Patient comorbidities and caregiver chronic conditions had a negative influence on caregiver meaning-based coping but no significant influence on patient meaning based coping. Caregiver meaning-based coping mediated relationships between patient comorbidities and caregiver health conditions and patient and caregiver QOL. No significant moderating effects were observed. CONCLUSIONS: Despite the severity of advanced cancer for patients and caregivers, the co-existing health problems of one member of the dyad have the potential to directly or indirectly affect the wellbeing of the other. Future research should consider how the number of patient comorbidities and caregiver chronic conditions, as well as the ability of patients and caregivers to manage those conditions, influences their meaning-based coping and wellbeing. Copyright © 2016 John Wiley & Sons, Ltd.

Interventions with family caregivers of cancer patients: meta-analysis of randomized trials.

Family caregivers of cancer patients receive little preparation, information, or support to perform their caregiving role. However, their psychosocial needs must be addressed so they can maintain their own health and provide the best possible care to the patient. The purpose of this article is to analyze the types of interventions offered to family caregivers of cancer patients, and to determine the effect of these interventions on various caregiver outcomes. Meta-analysis was used to analyze data obtained from 29 randomized clinical trials published from 1983 through March 2009. Three types of interventions were offered to caregivers: psychoeducational, skills training, and therapeutic counseling. Most interventions were delivered jointly to patients and caregivers, but they varied considerably with regard to dose and duration. The majority of caregivers were female (64%) and Caucasian (84%), and ranged in age from 18 to 92 years (mean age, 55 years). Meta-analysis indicated that although these interventions had small to medium effects, they significantly reduced caregiver burden, improved caregivers' ability to cope, increased their self-efficacy, and improved aspects of their quality of life. Various intervention characteristics were also examined as potential moderators. Clinicians need to deliver research-tested interventions to help caregivers and patients cope effectively and maintain their quality of life.

Effectiveness of implementing a dyadic psychoeducational intervention for cancer patients and family caregivers.

PURPOSE: This study examined the effectiveness, feasibility, and satisfaction with implementation of the FOCUS program in two US Cancer Support Community affiliates in Ohio and California as well as the cost to deliver the program. FOCUS is an evidence-based psychoeducational intervention for dyads (cancer patients and caregivers). METHODS: A pre-post-intervention design was employed. Eleven, five-session Focus programs were delivered by licensed professionals in a small group format (three-four dyads/group) to 36 patient-caregiver dyads. An Implementation Training Manual, a FOCUS Intervention Protocol Manual, and weekly conference calls were used to foster implementation. Participants completed questionnaires prior to and following completion of each five-session FOCUS program to measure primary (emotional distress, quality of life) and secondary outcomes (benefits of illness, self-efficacy, and dyadic communication). Enrollment and retention rates and fidelity to FOCUS were used to measure feasibility. Cost estimates were based on time and median hourly wages. Repeated analysis of variance was used to analyze the effect of FOCUS on outcomes for dyads. Descriptive statistics were used to examine feasibility, satisfaction, and cost estimates. RESULTS: FOCUS had positive effects on QOL (p = .014), emotional (p = .012), and functional (p = .049) well-being, emotional distress (p = .002), benefits of illness (p = .013), and self-efficacy (p = .001). Intervention fidelity was 85% with enrollment and retention rates of 71.4 and 90%, respectively. Participants were highly satisfied. Cost for oversight and delivery of the five-session FOCUS program was $168.00 per dyad. CONCLUSIONS: FOCUS is an economic and effective intervention to decrease distress and improve the quality of life for dyads.

The influence of dyadic symptom distress on threat appraisals and self-efficacy in advanced cancer and caregiving.

PURPOSE: Physical and psychological symptoms experienced by patients with advanced cancer influence their well-being; how patient and family caregiver symptom distress influence each other's well-being is less understood. This study examined the influence of patient and caregiver symptom distress on their threat appraisals and self-efficacy to cope with cancer. METHODS: We conducted a secondary analysis of baseline data from an RCT that enrolled patients with advanced cancer and their family caregivers (N = 484 dyads). Structural equation modeling and the actor-partner interdependence mediation model (APIMeM) were used to examine two models: threat appraisals as a mediator of the relationship between symptom distress and individual and family-related self-efficacy; and, self-efficacy (individual and family dimensions) as mediators of the relationship between symptom distress and threat appraisals. RESULTS: Data suggest the self-efficacy mediation model was the preferred model. More patient and caregiver symptom distress was directly associated with their own lower self-efficacy and more threatening appraisals. Patient and caregiver individual self-efficacy also mediated the relationship between their own symptom distress and threat appraisals. There were also significant interdependent effects. More patient symptom distress was associated with less caregiver family-related self-efficacy, and more caregiver symptom distress was directly associated with more threatening patient appraisals. CONCLUSIONS: Patient and caregiver symptom distress influenced their own and in some cases each other's cognitive appraisals. Limitations of this study include the use of cross-sectional data and assessments of individually-focused (vs. family-focused) threat appraisals. These findings highlight the need to consider the management of patient and caregiver symptoms during advanced cancer.