ABSTRACT
OBJECTIVES: Investigating associations between self-efficacy, social support and quality of life (HRQoL) and mediating effects of coping among bladder cancer (BC) patients treated with radical cystectomy (RC). METHODS: A cross-sectional study was conducted from January 2012 to December 2014 with 99 BC patients. An online survey assessed patient characteristics, HRQoL, coping strategies, self-efficacy and social support. A stepwise multiple linear regression model was used. RESULTS: Self-efficacy and social support were significantly associated with HRQoL. Complete mediation effects of adaptive/maladaptive coping strategies emerged for the associations between self-efficacy and social support with functional well-being (B = 0.247, 95% CI 0.119-0.374, p < 0.001; B = -0.414, 95% CI -0.526 to -0.302, p < 0.001) and total Functional Assessment of Cancer Therapy-Bladder (FACT-BI) (B = 0.779, 95% CI 0.351-1.207, p < 0.001; B = -1.969, 95% CI -2.344 to -1.594, p < 0.001). Maladaptive coping mediated the associations of self-efficacy and social support with physical well-being (B = -0.667, 95% CI -0.752 to -0.516, p < 0.001) and disease-specific symptoms (B = -0.413, 95% CI -0.521 to -0.304, p < 0.001). A partial mediation effect of adaptive coping was found for the association between self-efficacy and social well-being (B = 0.145, 95% CI 0.016-0.273, p < 0.05). Social support was significantly associated with emotional (B = 0.067, 95% CI 0.027-0.108, p < 0.001) and social well-being (B = 0.200, 95% CI 0.146-0.255, p < 0.001). CONCLUSION: Interventions should tackle self-efficacy, social support and coping strategies to improve BC patients' HRQoL.
Subject(s)
Quality of Life , Urinary Bladder Neoplasms , Adaptation, Psychological , Cross-Sectional Studies , Cystectomy , Female , Humans , Male , Quality of Life/psychology , Rare Diseases , Self Efficacy , Social Support , Urinary Bladder , Urinary Bladder Neoplasms/surgeryABSTRACT
Importance: Electronic systems that facilitate patient-reported outcome (PRO) surveys for patients with cancer may detect symptoms early and prompt clinicians to intervene. Objective: To evaluate whether electronic symptom monitoring during cancer treatment confers benefits on quality-of-life outcomes. Design, Setting, and Participants: Report of secondary outcomes from the PRO-TECT (Alliance AFT-39) cluster randomized trial in 52 US community oncology practices randomized to electronic symptom monitoring with PRO surveys or usual care. Between October 2017 and March 2020, 1191 adults being treated for metastatic cancer were enrolled, with last follow-up on May 17, 2021. Interventions: In the PRO group, participants (n = 593) were asked to complete weekly surveys via an internet-based or automated telephone system for up to 1 year. Severe or worsening symptoms triggered care team alerts. The control group (n = 598) received usual care. Main Outcomes and Measures: The 3 prespecified secondary outcomes were physical function, symptom control, and health-related quality of life (HRQOL) at 3 months, measured by the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (QLQ-C30; range, 0-100 points; minimum clinically important difference [MCID], 2-7 for physical function; no MCID defined for symptom control or HRQOL). Results on the primary outcome, overall survival, are not yet available. Results: Among 52 practices, 1191 patients were included (mean age, 62.2 years; 694 [58.3%] women); 1066 (89.5%) completed 3-month follow-up. Compared with usual care, mean changes on the QLQ-C30 from baseline to 3 months were significantly improved in the PRO group for physical function (PRO, from 74.27 to 75.81 points; control, from 73.54 to 72.61 points; mean difference, 2.47 [95% CI, 0.41-4.53]; P = .02), symptom control (PRO, from 77.67 to 80.03 points; control, from 76.75 to 76.55 points; mean difference, 2.56 [95% CI, 0.95-4.17]; P = .002), and HRQOL (PRO, from 78.11 to 80.03 points; control, from 77.00 to 76.50 points; mean difference, 2.43 [95% CI, 0.90-3.96]; P = .002). Patients in the PRO group had significantly greater odds of experiencing clinically meaningful benefits vs usual care for physical function (7.7% more with improvements of ≥5 points and 6.1% fewer with worsening of ≥5 points; odds ratio [OR], 1.35 [95% CI, 1.08-1.70]; P = .009), symptom control (8.6% and 7.5%, respectively; OR, 1.50 [95% CI, 1.15-1.95]; P = .003), and HRQOL (8.5% and 4.9%, respectively; OR, 1.41 [95% CI, 1.10-1.81]; P = .006). Conclusions and Relevance: In this report of secondary outcomes from a randomized clinical trial of adults receiving cancer treatment, use of weekly electronic PRO surveys to monitor symptoms, compared with usual care, resulted in statistically significant improvements in physical function, symptom control, and HRQOL at 3 months, with mean improvements of approximately 2.5 points on a 0- to 100-point scale. These findings should be interpreted provisionally pending results of the primary outcome of overall survival. Trial Registration: ClinicalTrials.gov Identifier: NCT03249090.
Subject(s)
Monitoring, Ambulatory , Neoplasm Metastasis , Patient Reported Outcome Measures , Adult , Electronics , Female , Health Status Indicators , Humans , Internet , Male , Middle Aged , Monitoring, Ambulatory/instrumentation , Monitoring, Ambulatory/methods , Neoplasm Metastasis/diagnosis , Neoplasm Metastasis/therapy , Neoplasms/diagnosis , Neoplasms/therapy , Neoplasms, Second Primary/diagnosis , Neoplasms, Second Primary/therapy , Quality of Life , Surveys and Questionnaires , TelemedicineABSTRACT
BACKGROUND: Prescribing oral oncolytic agents (OAs) for advanced cancers is increasing. AIMS: To explore changes in medication beliefs and the effects of symptom severity, cognitive effectiveness and depressive symptoms on medication beliefs over 12 weeks. METHODS: Secondary analysis of a randomized controlled trial, testing an intervention to promote symptom management and adherence [N = 230]. Questionnaires evaluated medication beliefs, symptom severity, depressive symptoms, and cognitive effectiveness. Linear mixed effects models were used for analyses. RESULTS: OA Necessity beliefs increased over time (mean difference 0.0112, SE = 0.055, p 0.04). Concern beliefs did not change and were lower for advanced cancers (-0.193, SE = 0.067, p < 0.01).Depressive symptoms were related to decreased Necessity beliefs (-0.012, SE = 0.005, p = 0.02), but not Concern beliefs. Medication beliefs were not associated with symptom severity or cognitive effectiveness. CONCLUSION: Patients with advanced cancer hold different medication beliefs compared to earlier staged cancers, lending insight into potential outcomes beyond adherence.
Subject(s)
Medication Adherence , Neoplasms , Health Knowledge, Attitudes, Practice , Humans , Neoplasms/drug therapy , Surveys and QuestionnairesABSTRACT
Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication.We examined the impact of a web-based legacy intervention on parent-child communication. We hypothesized that compared to usual care, legacy-making would improve quality of parent-child communication.Between 2015 and 2018, Facebook advertisements were used to recruit families of children (ages 7-17) with relapsed/refractory cancer. Parent-child dyads were randomly assigned to the intervention or usual care group. The intervention website guided children to create digital storyboards over 2 weeks by directing them to answer legacy questions about themselves and upload photographs, videos, and music. Families received a copy of the child's final digital story. Children and parents completed the Parent-Adolescent Communication Scale pre- (T1) and post-intervention (T2). Linear regressions tested for differences in change from T1 to T2 between the groups controlling for T1 values using an alpha of p < .05. Intervention effects were measured using Cohen's d. Ninety-seven parent-child dyads were included for analysis. Changes in parent-child communication were not statistically significantly different between the groups, yet meaningful intervention effects were observed. The strongest effects were observed for improving father-child communication (Cohen's d = -0.22-0.33). Legacy-making shows promise to facilitate improved parent-child communication, particularly for fathers. Future studies should include fathers and measure expression of feelings and parent-child interaction. Providers should continue to facilitate family communication for children with advanced disease and realize that legacy interventions may impact mother-child versus father-child communication differently.
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BACKGROUND: Self-management of symptoms related to cancer and its treatment is important for maintaining treatment regimens and improving outcomes. PURPOSE: To determine factors associated with engagement in a symptom self-management intervention among patients initiating oral anticancer treatment. METHODS: This secondary analysis included 127 patients randomized to the medication adherence reminder and symptom management intervention in a recently completed trial. Patients were recruited from six Comprehensive Cancer Centers, interviewed at intake, and mailed a Symptom Management Toolkit (Toolkit) with self-care management strategies for 18 symptoms. During eight automated telephone weekly calls, patients were asked to use the Toolkit to manage elevated symptoms. Toolkit use and symptoms were tracked weekly, and generalized linear mixed-effects models were used to determine factors predictive of Toolkit use. General linear modeling was used to relate the Toolkit use during intervention to postintervention symptom severity. RESULTS: Better cognitive function at intake into the trial and higher symptom burden were predictive of the patients' initial decision to try the Toolkit during Week 1. In subsequent weeks, Toolkit use in the previous week and worsening of symptoms were associated with greater odds of Toolkit use. The extent of Toolkit use modified the relationship between intake and 8 week symptom severity: among patients with higher levels of severity at intake, use of the Toolkit conferred greater benefit at 8 weeks. CONCLUSIONS: Patients make realistic decisions regarding when to use a self-directed approach to self-management and are likely to use strategies when their symptoms are higher and to forego use once symptoms subside. CLINICAL TRIAL REGISTRATION: NCT02043184.
Subject(s)
Neoplasms/therapy , Patient Participation , Reminder Systems , Self-Management/methods , Administration, Oral , Aged , Antineoplastic Agents/administration & dosage , Female , Humans , Male , Manuals as Topic , Medication Adherence , Middle Aged , Severity of Illness Index , TelephoneABSTRACT
BACKGROUND: Patients with advanced cancer often experience adverse events related to oral antineoplastic agents (OAAs) and permanent OAA medication stoppages, yet it is unknown how these factors impact medication beliefs. Such beliefs about OAA therapy may lend insight into decisions about continued cancer treatment near the end of life. PURPOSE: To explore relationships that adverse events and permanent OAA stoppages have on medication beliefs during the first 12 weeks following new OAA initiation. DESIGN: A secondary data analysis from a National Cancer Institute-funded randomized controlled trial testing an intervention to promote symptom management and OAA adherence. SETTING/SUBJECTS: Patients ≥ 21 years of age initiating a new course of OAA medication were recruited from six United States Comprehensive Cancer Centers. This analysis was based on a subset of patients with advanced disease (N = 60). MEASUREMENTS: Beliefs about Medicine Questionnaire, Common Terminology Criteria for Adverse Events, and medical records of permanent OAA stoppages. RESULTS: Significant decline in beliefs regarding the necessity of OAA medications existed between patients experiencing three or more adverse events and those experiencing a permanent OAA stoppage. CONCLUSIONS: Beliefs about the necessity of OAA medication change when physicians stop OAA medication or the patient experiences three or more adverse events. Concern regarding OAA medication did not change in response to medication stoppage or adverse events for this sample. Perhaps, patients with advanced cancers may be more accepting of adverse events that occur along the treatment trajectory and are not concerned about OAA medication once it is stopped. Findings suggest the importance of physicians' discussions of adverse events and decisions to permanently stop OAA medication as a means of transitioning to a new phase of cancer care that may include palliative or hospice considerations, given that beliefs about medication necessity are changing during these threats to cancer treatment.
Subject(s)
Antineoplastic Agents/therapeutic use , Health Knowledge, Attitudes, Practice , Neoplasms/drug therapy , Neoplasms/psychology , Patient Satisfaction , Adult , Antineoplastic Agents/adverse effects , Decision Making , Female , Humans , Male , Middle Aged , Surveys and Questionnaires , Young AdultABSTRACT
Individuals with inflammatory bowel disease (IBD) are commonly diagnosed when they are between the ages of 18-29, a developmental period known as emerging adulthood. Typically, emerging adults are subsumed into the category of adults even though emerging adults have unique developmental needs. In this descriptive study of IBD in emerging adults, the aims were to (a) determine the prevalence of symptoms; (b) describe the severity of symptoms and their interference with daily activities; and (c) examine the association between individual symptom severity and presence of fatigue. Emerging adults with IBD were recruited using web-based convenience sampling. Sixty-one individuals met the inclusion criteria. They had a mean age of 24.7 and a disease duration of 6.4 years. The most prevalent symptoms reported were: fatigue (n = 44, 72.1%), abdominal cramps (n = 39, 63.9%), abdominal pain (n = 39, 63.9%), and diarrhea (n = 38, 62.3%). The symptom with the greatest severity and interference with daily activities was fatigue. Abdominal cramps, abdominal pain, diarrhea, passing gas, and abdominal tenderness were associated with fatigue when controlling for age, emerging adulthood, gender, time since diagnosis, and current steroid use. Among emerging adults with IBD, fatigue is the most prevalent symptom and is the symptom with the greatest severity and interference with daily activities. These results suggest a need for interventions aimed at reducing both fatigue and gastrointestinal symptoms among emerging adults with IBD.
Subject(s)
Age of Onset , Inflammatory Bowel Diseases/diagnosis , Inflammatory Bowel Diseases/physiopathology , Symptom Assessment , Adolescent , Adult , Cross-Sectional Studies , Female , Humans , Inflammatory Bowel Diseases/epidemiology , Male , Prevalence , Surveys and Questionnaires , Young AdultABSTRACT
The majority of research among individuals with inflammatory bowel disease (IBD) focuses on perceived social support. A gap exists regarding the role of received social support in self-management enhancement. The purpose of this study was to examine specific contextual factors (individual, condition-specific, and emerging adulthood factors) that influence received social support (total, informational, emotional, and tangible) among emerging adults (ages 18-29 years) with IBD. A convenience sample of 61 emerging adults with a diagnosis of IBD was obtained. An association was found between high total received social support and several individual factors such as being closer to the younger end of the age range (ages 18-29 years), married, and fully employed. When controlling for time since diagnosis and symptom interference, high tangible received social support was associated with the use of immunomodulator and biological medications. Emerging adulthood factors were not associated with total or any types of received social support. Future research could examine differences between types of social support and self-management behaviors. These findings contribute a new direction for intervention development with a focus on individual and condition-specific factors to enhance received social support and ultimately health outcomes for individuals with IBD.
Subject(s)
Colitis , Inflammatory Bowel Diseases , Self-Management , Adolescent , Adult , Cross-Sectional Studies , Humans , Inflammatory Bowel Diseases/therapy , Social Support , Young AdultABSTRACT
OBJECTIVE: This manuscript assesses association between depressive symptoms and symptoms from cancer and its treatment during the first 12 weeks of a new oral oncolytic treatment. METHODS: This secondary analysis used data from a recently completed trial of an intervention to improve adherence to oral oncolytic treatment and manage symptoms. Following the initiation of the new oral oncolytic medication, 272 patients were interviewed at intake and weeks 4, 8, and 12 to assess depressive symptoms, and symptoms from cancer and its treatment. Depressive symptoms were measured using the Center for Epidemiologic Studies-Depression (CES-D20). The summed index of 18 cancer-related and treatment-related symptoms as well as the number of symptoms above threshold at intake, weeks 4, 8, and 12 were related to intake and time-varying CES-D20 using linear mixed effects models. RESULTS: Depressive symptomatology was a significant predictor of cancer-related and treatment-related symptoms at all-time points, but the strength of this relationship was greatest at the time of oral oncolytic agent initiation and at week 4. The strength of this relationship was the same for both summed symptom severity index and the number of symptoms above threshold, and using either intake or time-varying CES-D20. CONCLUSION: Introducing strategies to treat and manage symptoms of depression along with other symptoms might have added benefits among patients who start a new oral oncolytic treatment and report modest to higher levels of depressive symptoms. Assessments for the impact of strategies to lower depressive symptoms can be taken within the first 4 weeks.
Subject(s)
Antihypertensive Agents/therapeutic use , Depression/psychology , Neoplasms/psychology , Severity of Illness Index , Adult , Depression/diet therapy , Female , Humans , Male , Middle Aged , Neoplasms/drug therapyABSTRACT
OBJECTIVE: This paper describes a derived model that provides a conceptual framework for understanding medication beliefs among patients with advanced cancer receiving oral oncolytic agents. METHODS: Theory derivation was used to (a) examine the phenomenon of medication beliefs in cross-disciplinary research; (b) select a parent theory for derivation; (c) identify parent theory concepts and/or structure to use in derivation; and (d) redefine parent theory concepts and structure to create a derived model. RESULTS: Medication beliefs are shaped by previous experiences, including cognitive and emotional factors, past health and illness encounters, and medication-taking behaviours. Medication beliefs are defined within a larger mental model of illness representation for which medication was prescribed. Individuals independently hold both positive and negative medication beliefs at the same time. This distinction is critical to understanding how dichotomous components of medication beliefs change over time as they are influenced by varying treatment-related factors. CONCLUSION: This paper contributes to conceptual knowledge regarding the phenomenon of medication beliefs and their impact on health behaviour. Findings can support oncology interventions to improve patient outcomes including medication adherence.
Subject(s)
Antineoplastic Agents/administration & dosage , Attitude to Health , Neoplasms/psychology , Activities of Daily Living , Administration, Oral , Cognition/physiology , Depression/etiology , Drug Substitution , Emotions , Health Behavior , Humans , Medication Adherence , Neoplasms/drug therapy , Self-ControlABSTRACT
BACKGROUND: Emerging adulthood is a unique developmental stage, which may affect individuals' self-management behaviors, social support, and the relationship between these two constructs. Among older adults, social support has been shown to improve self-management behaviors for individuals with chronic conditions; however, this relationship has not been examined with emerging adults (age 18-29 years) who have inflammatory bowel disease (IBD). OBJECTIVES: The aim of the study was to examine the relationship between two conceptualizations of social support (received and perceived availability of social support) and IBD-related self-management behaviors among emerging adults with IBD. METHODS: A convenience sample of emerging adult IBD individuals (currently prescribed medication to manage IBD) were recruited through ResearchMatch, Facebook, and word of mouth. The study was guided by key elements of the individual and family self-management theory. Participants responded to demographic and condition-specific questionnaires: the Inventory of Dimensions of Emerging Adulthood, the Inventory of Socially Supportive Behaviors, the Medical Outcomes: Social Support Survey, the Medication Adherence Report Scale, and the Dietary Screener Questionnaire. RESULTS: Emerging adults with high received informational support reported greater medication adherence compared to those with low received informational support when controlling for biological medications, time since diagnosis, symptom frequency, and feeling in-between adolescence and adulthood. Neither type of social support was associated with diet modification. DISCUSSION: Received informational social support, medication type, time since diagnosis, symptoms, and emerging adulthood factors have the potential to influence medication adherence. Received informational social support interventions, such as patient-to-patient or group-based mentoring, may serve to improve medication adherence among emerging adults with IBD.
Subject(s)
Inflammatory Bowel Diseases/therapy , Self-Management/psychology , Social Support , Adolescent , Adult , Cross-Sectional Studies , Female , Humans , Male , Medication Adherence/statistics & numerical data , Surveys and Questionnaires , Young AdultABSTRACT
BACKGROUND: Symptom clusters reflect the person's experience of multiple cooccurring symptoms. Although a variety of statistical methods are available to address the clustering of symptoms, latent transition analysis (LTA) characterizes patient membership in classes defined by the symptom experience and captures changes in class membership over time. OBJECTIVES: The purposes of this article are to demonstrate the application of LTA to cancer symptom data and to discuss the advantages and disadvantages of LTA relative to other methods of managing and interpreting data on multiple symptoms. METHODS: Data from a total of 495 adult cancer patients who participated in randomized clinical trials of two symptom management interventions were analyzed. Eight cancer- and treatment-related symptoms reflected the symptom experience. Latent transition analysis was employed to identify symptom classes and evaluate changes in symptom class membership from baseline to the end of the interventions. RESULTS: Three classes, "A (mild symptoms)," "B (physical symptoms)," and "C (physical and emotional symptoms)," were identified. Class A patients had less comorbidity, better physical and emotional role effect, and better physical function than the other classes did. The number of symptoms, general health perceptions, and social functioning were significantly different across the three classes and were poorest in Class C. Emotional role functioning was poorest in Class C. Older adults were more likely to be in Class B than younger adults were. Younger adults were more likely to be in Class C (p < .01). Among patients in Class C at baseline, 41.8% and 29.0%, respectively, transitioned to Classes A and B at the end of the interventions. DISCUSSION: These results demonstrate that symptom class membership characterizes differences in the patient symptom experience, function, and quality of life. Changes in class membership represent longitudinal changes in the course of symptom management. Latent class analysis overcomes the problem of multiple statistical testing that separately addresses each symptom.
Subject(s)
Latent Class Analysis , Neoplasms/psychology , Patient Outcome Assessment , Quality of Life/psychology , Adaptation, Psychological , Antineoplastic Combined Chemotherapy Protocols/administration & dosage , Fatigue/psychology , Fear , Female , Humans , Male , Middle Aged , Neoplasms/drug therapy , Surveys and QuestionnairesABSTRACT
PURPOSE: The purpose was to determine the relationship between social support, psychological symptoms and self-management behaviors among adults with inflammatory bowel disease (IBD) and examine the influence of types of social support and patient age. DESIGN: This was a systematic review. PubMed, Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Communication and Mass Media Complete, and Communication Abstracts were searched. Publication dates were limited to January 2000 to August 2018. METHODS: The systematic review was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analysis statement, and quality was appraised based on the Critical Appraisal Skills Programme for cohort studies tool. The data were synthesized using narrative synthesis techniques. FINDINGS: The literature review yielded 458 results. Eight articles met inclusion criteria. Articles utilized a variety of conceptualizations of both social support and self-management behaviors, making comparisons difficult. Findings demonstrated an inverse relationship between social support and psychological symptoms, and in one study only when social support buffered high stress. Studies with significant relationships between age and self-management behaviors indicated that a lower age was associated with decreased self-management behaviors. CONCLUSIONS: Social support has the potential to influence psychological symptoms among patients with IBD. Future research should examine types of social support (i.e., emotional, informational, and tangible support) and measure levels of received social support. CLINICAL RELEVANCE: Social support may serve as a modifiable factor to improve psychological symptoms among adults with IBD. Younger adults (age <40 years) may benefit from specialized interventions to address self-management behaviors.
Subject(s)
Inflammatory Bowel Diseases/psychology , Self-Management/psychology , Social Support , Age Factors , HumansABSTRACT
In an era of rapid technological evolution, mental healthcare providers are tapping into technology that offers feasible and effective alternatives to reach patients who suffer from depression. This paper provides a brief history and description of current technologies, frequently used taxonomies, and specific applications for the assessment and treatment of depression. These include online healthcare communities and social media, automated screening, wearable technology, and virtual reality therapy. A review of a secondary analysis that incorporated technology used with patients experiencing depressive symptoms is provided and future trends in mHealth or cellular-based technologies to treat depression are explored.
Subject(s)
Depressive Disorder/diagnosis , Depressive Disorder/therapy , Mental Health Services/trends , Telemedicine/trends , HumansABSTRACT
OBJECTIVE: Cancer patients, particularly those prescribed with oral oncolytic medications, face treatment side effects and temporary and permanent stoppages of treatment. This research examines how events during treatment affect patients' beliefs regarding oral oncolytic medications. METHODS: A total of 272 cancer patients initiating 1 of 28 oral oncolytic agents were followed for 12 weeks. Assessments of Beliefs About Medications Questionnaire, symptoms, physical function, and depression measures were performed during telephone interviews at intake (medication start) and 4, 8, and 12 weeks. Electronic medical record audits identified dates of temporary and permanent medication stoppages. Linear mixed-effects models were used for longitudinal analyses of the Beliefs About Medications Questionnaire scores in relation to patient characteristics, symptom severity, and medication stoppages. RESULTS: Over the initial 12 weeks, beliefs about the necessity of oral medications have increased, concerns have decreased, and interference of medications with daily lives has increased. Permanent stoppage of a medication predicted significant declines in beliefs about its necessity over time. Male patients, those less educated, those reporting higher symptom severity, and those experiencing temporary stoppages had greater concerns. Interference of medications with daily life was higher for males, increased with higher symptom severity, and differed by drug category. CONCLUSIONS: Patients' beliefs in the necessity of their oral medication were affected only by a permanent drug stoppage. Symptom severity, education, and patient sex affected patients' beliefs about their concerns with their medications and the interference medications posed for their daily lives. Interventions may need to target the distinct dimensions of beliefs during treatment with oral oncolytic agents.
Subject(s)
Antineoplastic Agents/administration & dosage , Health Knowledge, Attitudes, Practice , Medication Adherence , Neoplasms/drug therapy , Aged , Female , Humans , Male , Middle AgedABSTRACT
Conducting research into supportive care for patients as they initiate treatment with oral oncolytic agents poses numerous new challenges. Some of these medications have very complex dosing schedules and produce symptoms that patients need to manage at home with less reliance on oncology clinicians. We describe lessons learned from a multi-site trial designed to improve adherence to these medications and self-management of symptoms among patients newly prescribed oral oncolytic agents. Identifying these challenges can assist researchers to improve the integrity of their future supportive care trials.
Subject(s)
Neoplasms/drug therapy , Oncolytic Virotherapy/methods , Administration, Oral , Humans , Neoplasms/pathology , Research DesignABSTRACT
Questionnaires are a standard component of quantitative research, but seldom do researchers consider the importance of item clarity and participant comprehension. This is particularly true among the often overlooked individual and condition-specific items which characterize the patient and disease process. Cognitive interviewing is one approach to assess item clarity and identify how participants understand and respond to questions. The purpose of this paper is to describe the process of cognitive interviewing used to identify questions that are unclear or challenging to answer for a unique population, emerging adults (age 18-29) with inflammatory bowel disease (IBD). Through cognitive interviewing four areas were identified as needing improvement among individual and condition-specific items: 1) clarity - describing terms and adding details to item directions; 2) cognitive recall burden - rewording questions to avoid the need for mental math, 3) timeframe - adding phrases like 'in the past 2â¯weeks,' and 4) question relevance - including items on disease remission. Analysis of these four areas may guide other researchers working with IBD patients to obtain high quality data, as well as stimulate questionnaire adaption using cognitive interviewing with other populations. Cognitive interviewing can be useful when drafting a new questionnaire or when adapting an established questionnaire; in either case, it can enhance item clarity and participant comprehension.
Subject(s)
Cognition , Inflammatory Bowel Diseases/physiopathology , Inflammatory Bowel Diseases/psychology , Interviews as Topic , Surveys and Questionnaires/standards , Adolescent , Adult , Female , Humans , Male , Young AdultABSTRACT
BACKGROUND: Glioblastoma multiforme (GBM) is associated with a poor prognosis, and patients rely heavily on family caregivers for physical and emotional support. The capability and mental health of family caregivers may influence their ability to provide care and affect patient outcomes. The objective of the current study was to investigate whether caregivers' anxiety, depressive symptoms, burden, and mastery influenced survival in a sample of patients newly diagnosed with GBM. METHODS: Baseline data from caregiver-patient dyads participating in a longitudinal study funded by the National Institutes of Health were used. Cox regression analyses were performed to determine whether caregiver anxiety (Profile of Mood States-Anxiety), depressive symptoms (Center for Epidemiologic Studies-Depression Scale), burden (Caregiver Reaction Assessment), and feelings of mastery (Mastery Scale) predicted the survival time of patients with GBM after controlling for known covariates (patient age, Karnofsky performance status, type of surgery, and postsurgical treatment). RESULTS: A total of 88 caregiver-patient dyads were included. The median overall survival for the sample was 14.5 months (range, 0-88 months). After controlling for covariates, caregiver mastery was found to be predictive of patient survival. With each unit increase in mastery, there was a 16.1% risk reduction in patient death (95% confidence interval, 0.771-0.913; P<.001). CONCLUSIONS: To the authors' knowledge, the results of the current study are among the first to explore the impact of family caregiving on the outcomes of patients with GBM. If these results are supported in other studies, providing neuro-oncology caregivers with more structured support and guidance in clinical practice has the potential to improve caregivers' feelings of mastery, thereby influencing patients' well-being for the better. Cancer 2017;123:832-40. © 2016 American Cancer Society.
Subject(s)
Caregivers/psychology , Glioblastoma/epidemiology , Glioblastoma/psychology , Survival Rate , Adolescent , Adult , Aged , Anxiety/epidemiology , Anxiety/psychology , Cost of Illness , Depression/epidemiology , Depression/psychology , Female , Glioblastoma/pathology , Humans , Longitudinal Studies , Male , Middle Aged , Social SupportABSTRACT
PURPOSE: A significant minority of colorectal cancer (CRC) patients experience clinically meaningful distress that may warrant intervention. The goal of this systematic review was to assess the impact of psychosocial interventions on quality-of-life and psychosocial outcomes for CRC patients. METHODS: A systematic search of CINAHL, MEDLINE, PsycINFO, and PsycARTICLES was undertaken to obtain relevant randomized controlled trials (RCTs) published through October 2016. RESULTS: Fourteen RCTs of psychosocial interventions for CRC patients were identified. Only three of these RCTs showed significant intervention effects on multiple mental health outcomes. These interventions included written and verbal emotional expression, progressive muscle relaxation training, and a self-efficacy enhancing intervention. Eight of the 14 trials, testing a range of psychoeducational and supportive care interventions, produced little to no effects on study outcomes. An evaluation of RCT quality highlighted the need for greater rigor in study methods and reporting. CONCLUSION: A limited evidence base supports the efficacy of psychosocial interventions for CRC patients. Large-scale trials are needed before drawing definitive conclusions regarding intervention impact.
Subject(s)
Colorectal Neoplasms/psychology , Quality of Life/psychology , Adult , Colorectal Neoplasms/pathology , Female , HumansABSTRACT
AIM: To evaluate and quantify the intervention fidelity of a symptom management protocol through implementation of a scorecard, using an exemplar study of caregiver-delivered reflexology for people with breast cancer. BACKGROUND: Studies on caregiver-delivered symptom management interventions seldom include adequate information on protocol fidelity, contributing to potentially suboptimal provision of the therapeutic intervention, hindering reproducibility and generalizability of the results. DESIGN: Fidelity assessment of a 4-week intervention protocol in a randomized controlled trial (RCT) with data collection between 2012 - 2016. METHODS: The National Institutes of Health Behaviour Change Consortium (NIH-BCC) conceptual model for intervention fidelity guided the study. The five NIH-BCC fidelity elements are: (1) dose; (2) provider training; (3) intervention delivery; (4) intervention receipt; and (5) enactment. To illustrate the elements, an intervention protocol was deconstructed and each element quantified using a newly developed fidelity scorecard. RESULTS: Mean scores and frequency distributions were derived for the scorecard elements. For dose, the mean number of sessions was 4·4, 96% used the correct intervention duration and 29% had 4 weeks with at least one session. Provider training was achieved at 80% of the maximum score, intervention delivery was 96%, intervention receipt was 99% and enactment indicated moderate adoption at 3·8 sessions per patient. The sample mean score was 15·4 out of 16, indicating the high overall fidelity. CONCLUSION: Research findings that include description of how fidelity is both addressed and evaluated are necessary for clinical translation. Clinicians can confidently recommend symptom management strategies to patients and caregivers when fidelity standards are explicitly reported and measured.