The Evolving Roles and Expectations of Inpatient Palliative Care Through COVID-19: a Systematic Review and Meta-synthesis.

BACKGROUND: Palliative care performed a central role in responding to the systemic suffering incurred by the COVID-19 pandemic. Yet, few studies have elucidated the inpatient palliative care specialists' experiences and perceptions. OBJECTIVE: Systematically review and synthesize the evolving roles and expectations of inpatient palliative care specialists in response to COVID-19. DESIGN: A systematic review and meta-synthesis informed by Thomas and Harden's framework and Pozzar et al.'s approach was conducted in accordance with Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. DATA SOURCES: MEDLINE, EMBASE, CINAHL, and PubMed were systematically searched for articles published between December 2019 and March 2023. We included all peer-reviewed qualitative and mixed-method literature studying the roles and expectations of inpatient palliative care specialists. A mixed-method appraisal tool was used for quality assessment. RESULTS: Of 3869 unique articles, 52 were included. Studies represented North American (n = 23), European (n = 16), South American (n = 4), Oceanic (n = 2), Asian (n = 2), West African (n = 1), Middle Eastern (n = 1), and inter-continental settings (n = 3). Most were reported in English (n = 50), conducted in 2020 (n = 28), and focused on the perspectives of inpatient palliative care clinicians (n = 28). Three descriptive themes captured the roles and expectations of inpatient palliative care specialists: shifting foundations, reorienting to relationships, and evolving identity. Two analytical themes were synthesized: palliative care propagates compassion through a healing presence, and palliative care enhances the systemic response to suffering through nimble leadership. CONCLUSION: Inpatient palliative care specialists responded to the COVID-19 pandemic by establishing their healing presence and leading with their adaptability. To develop institutionally tailored and collaborative responses to future pandemics, future studies are needed to understand how inpatient palliative care clinicians are recognized and valued within their institutions.

Experiences of patients with peritoneal carcinomatosis-related complex care needs and their caregivers.

BACKGROUND: Patients with peritoneal carcinomatosis (PC) frequently undergo palliative procedures, yet these patients and their caregivers report being unprepared to manage ostomies, drains, and other complex care needs at home. The purpose of this study was to characterize the unique needs of these patients and their caregivers during care transitions. METHODS: Patients completed measures of health status and advance care planning, caregivers completed measures of preparedness and burden, and all participants completed measures of depression and anxiety. Participants detailed their experiences in individual, semi-structured interviews. We analyzed data using descriptive statistics and conventional content analysis. RESULTS: Sixty-one patients and 39 caregivers completed baseline measures. Twenty-four (39.3%) patients acknowledged their terminal illness and seven (11.5%) had discussed end-of-life care preferences with clinicians. Most (26/39, 66.7%) caregivers provided daily care. Among caregivers who managed symptoms, few were taught how to do so (6/20, 30%). Seven patients (11.5%) and seven caregivers (17.9%) met case criteria for anxiety, while 15 patients (24.6%) and two caregivers (5.1%) met case criteria for depression. Interview participants described a diagnosis of PC as a turning point for which there is no road map and identified the need for health systems change to minimize suffering. CONCLUSION: Patients with PC and their caregivers are highly burdened by symptoms and care needs. Patients' prognostic understanding and advance care planning are suboptimal. Interventions that train patients with PC and their caregivers to perform clinical care tasks, facilitate serious illness conversations, and provide psychosocial support are needed.

Improving the palliative-procedure decision-making process for patients with peritoneal carcinomatosis: A secondary analysis.

BACKGROUND: Peritoneal carcinomatosis (PC) is common in patients with advanced gynecologic and gastrointestinal cancers. Frequently, patients with PC undergo palliative surgery or procedures to manage disease-related complications and side effects. However, there are limited data regarding patients' and family caregivers' decision-making processes about these procedures. Thus, we sought to describe the decision-making experiences of patients with PC who elect to pursue palliative surgical procedures and their family caregivers. METHODS: We conducted a secondary analysis of qualitative data collected during a pilot randomized controlled trial of BOLSTER, a nurse-led telehealth intervention for patients with PC and their caregivers after an acute hospitalization and palliative procedure. Participants in both study arms described their experiences in semi-structured interviews. We re-analyzed coded qualitative data with a focus on understanding decision-making experiences surrounding palliative surgery and procedures using conventional content analysis. RESULTS: Interviews from 32 participants, 23 patients and 9 caregivers, were analyzed. Participants reported their decision-making was complicated by illness uncertainty and a desire for clear, effective communication with surgical and medical oncology teams. Participants requested more information about the impact of palliative procedures on their daily life. Several also noted that, without improved understanding, a misalignment between patient and family caregiver goals and palliative procedures may inadvertently increase suffering. CONCLUSION: Discussions related to patients' goals and preferences can improve the quality of treatment decision-making in patients with PC and their caregivers. Future research should test interventions to improve advanced cancer patients' illness understanding and decision-making surrounding palliative surgery and procedures.

Feasibility and acceptability of a nurse-led telehealth intervention (BOLSTER) to support patients with peritoneal carcinomatosis and their caregivers: A pilot randomized clinical trial.

OBJECTIVE: Patients with advanced gynecologic (GYN) and gastrointestinal (GI) cancers frequently develop peritoneal carcinomatosis (PC), which limits prognosis and diminishes health-related quality of life (HRQoL). Palliative procedures may improve PC symptoms, yet patients and caregivers report feeling unprepared to manage ostomies, catheters, and other complex needs. Our objectives were to (1) assess the feasibility of an efficacy trial of a nurse-led telehealth intervention (BOLSTER) for patients with PC and their caregivers; and (2) assess BOLSTER's acceptability, potential to improve patients' HRQoL and self-efficacy, and potential impact on advance care planning (ACP). METHODS: Pilot feasibility RCT. Recently hospitalized adults with advanced GYN and GI cancers, PC, and a new complex care need and their caregivers were randomized 1:1 to BOLSTER or enhanced discharge planning (EDP). We defined feasibility as a ≥ 50% approach-to-consent ratio and acceptability as ≥70% satisfaction with BOLSTER. We assessed patients' HRQoL and self-efficacy at baseline and six weeks, then compared the proportion experiencing meaningful improvements by arm. ACP documentation was identified using natural language processing. RESULTS: We consented 77% of approached patients. In the BOLSTER arm, 91.0% of patients and 100.0% of caregivers were satisfied. Compared to EDP, more patients receiving BOLSTER experienced improvements in HRQoL (68.4% vs. 40.0%) and self-efficacy for managing symptoms (78.9% vs. 35.0%) and treatment (52.9% vs. 42.9%). The BOLSTER arm had more ACP documentation. CONCLUSIONS: BOLSTER is a feasible and acceptable intervention with the potential to improve patients' HRQoL and promote ACP. An efficacy trial comparing BOLSTER to usual care is underway. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03367247; PI: Wright.

Identification of distinct symptom profiles in patients with gynecologic cancers using a pre-specified symptom cluster.

PURPOSE: Pain, fatigue, sleep disturbance, and depression are four of the most common symptoms in patients with gynecologic cancer. The purposes were to identify subgroups of patients with distinct co-occurring pain, fatigue, sleep disturbance, and depression profiles (i.e., pre-specified symptom cluster) in a sample of patients with gynecologic cancer receiving chemotherapy and assess for differences in demographic and clinical characteristics, as well as the severity of other common symptoms and QOL outcomes among these subgroups. METHODS: Patients completed symptom questionnaires prior to their second or third cycle of chemotherapy. Latent profile analysis was used to identify subgroups of patients using the pre-specified symptom cluster. Parametric and nonparametric tests were used to evaluate for differences between the subgroups. RESULTS: In the sample of 233 patients, two distinct latent classes were identified (i.e., low (64.8%) and high (35.2%)) indicating lower and higher levels of symptom burden. Patients in high class were younger, had child care responsibilities, were unemployed, and had a lower annual income. In addition, these women had a higher body mass index, a higher comorbidity burden, and a lower functional status. Patients in the high class reported higher levels of anxiety, as well as lower levels of energy and cognitive function and poorer quality of life scores. CONCLUSIONS: This study identified a number of modifiable and non-modifiable risk factors associated with membership in the high class. Clinicians can use this information to refer patients to dieticians and physical therapists for tailored interventions.

Interventions to support decision making in people considering germline genetic testing for BRCA 1/2 pathogenic and likely pathogenic variants: A scoping review.

Pathogenic and likely pathogenic variants in BRCA1 and BRCA2 (BRCA1/2) are medically actionable and may inform hereditary breast and ovarian cancer (HBOC) treatment and prevention. However, rates of germline genetic testing (GT) in people with and without cancer are suboptimal. Individuals' knowledge, attitudes, and beliefs may influence GT decisions. While genetic counseling (GC) provides decision support, the supply of genetic counselors is insufficient to meet demand. Accordingly, there is a need to explore the evidence on interventions that aim to support BRCA1/2 testing decisions. We conducted a scoping review of PubMed, CINAHL, Web of Science, and PsycINFO using search terms related to HBOC, GT, and decision making. First, we screened records to identify peer-reviewed reports that described interventions to support BRCA1/2 testing decisions. Next, we reviewed full-text reports and excluded studies that lacked statistical comparisons or enrolled previously tested individuals. Finally, we extracted study characteristics and findings into a table. All records and reports were reviewed independently by two authors; decisions were tracked in Rayyan, and discrepancies were resolved through discussion. Of 2116 unique citations, 25 met the eligibility criteria. Articles were published between 1997 and 2021 and described randomized trials and nonrandomized, quasi-experimental studies. Most studies tested technology-based (12/25, 48%) or written (9/25, 36%) interventions. Nearly half (12/25, 48%) of interventions were designed to complement traditional GC. Of the interventions compared to GC, 75% (6/8) increased or had a noninferior effect on knowledge, and 67% (4/6) decreased or had a noninferior effect on decisional conflict. Intervention effects on GT uptake were mixed, which may reflect evolving eligibility criteria for GT. Our findings suggest novel interventions may promote informed GT decision making, but many were developed to complement traditional GC. Trials that assess the effects of decision support interventions in diverse samples and evaluate implementation strategies for efficacious interventions are warranted.

Communicating is analogous to caring: A systematic review and thematic synthesis of the patient-clinician communication experiences of individuals with ovarian cancer.

OBJECTIVE: To systematically review and synthesize the patient-clinician communication experiences of individuals with ovarian cancer. METHODS: The CINAHL, Embase, MEDLINE, PsycINFO, and Web of Science databases were reviewed for articles that described (a) original qualitative or mixed methods research, (b) the experiences of individuals with ovarian cancer, and (c) findings related to patient-clinician communication. Relevant data were extracted from study results sections, then coded for descriptive and analytical themes in accordance with Thomas and Harden's approach to thematic synthesis. Data were coded by two authors and discrepancies were resolved through discussion. RESULTS: Of 1,390 unique articles, 65 met criteria for inclusion. Four descriptive themes captured participants' experiences communicating with clinicians: respecting me, seeing me, supporting me, and advocating for myself. Findings were synthesized into three analytical themes: communication is analogous to caring, communication is essential to personalized care, and communication may mitigate or exacerbate the burden of illness. SIGNIFICANCE OF RESULTS: Patient-clinician communication is a process by which individuals with ovarian cancer may engage in self-advocacy and appraise the extent to which they are seen, respected, and supported by clinicians. Strategies to enhance patient-clinician communication in the ovarian cancer care setting may promote patient perceptions of patient-centered care.

How does patient-centered communication in ovarian cancer care enhance patient well-being? A mixed methods study.

OBJECTIVE: Greater perceived patient-centered communication (PCC) is associated with better health-related quality of life (HRQoL) in patients with ovarian cancer. Quantitative measures of PCC and HRQoL do little to explain this association. We interviewed patients with high and low ratings of PCC to understand how it is associated with HRQoL. METHODS: Explanatory sequential mixed methods study. Participants were English-speaking U.S. adults with ovarian cancer. We assessed PCC with the Patient-Centered Communication - Cancer (PCC-Ca)-36 (possible score range 1-5; higher scores represent greater patient-centeredness), and purposively sampled 14 participants with total scores in the top and bottom quartiles. Participants completed individual, semi-structured interviews about their communication experiences. Guided by the National Cancer Institute Framework for PCC in Cancer Care, we analyzed interview transcripts using directed content analysis. We integrated survey and interview findings in a joint display. RESULTS: Among 176 survey respondents, PCC-Ca-36 total scores ranged from 1.7 to 5.0. Participants with scores in the top quartile (4.8-5.0) perceived clinicians as proactive and attentive to psychosocial concerns. Those with scores in the bottom quartile (1.7-3.5) described not feeling known as an individual and receiving limited support for self-management. CONCLUSIONS: The association between PCC and QoL may be partially explained by differences in perceived support for psychosocial concerns and self-management. PCC may facilitate receipt of proactive, personalized care.

Concordance between influential adverse treatment outcomes and localized prostate cancer treatment decisions.

BACKGROUND: Although treatment decisions for localized prostate cancer (LPC) are preference-sensitive, the extent to which individuals with LPC receive preference-concordant treatment is unclear. In a sample of individuals with LPC, the purpose of this study was to (a) assess concordance between the influence of potential adverse treatment outcomes and treatment choice; (b) determine whether receipt of a decision aid predicts higher odds of concordance; and (c) identify predictors of concordance from a set of participant characteristics and influential personal factors. METHODS: Participants reported the influence of potential adverse treatment outcomes and personal factors on treatment decisions at baseline. Preference-concordant treatment was defined as (a) any treatment if risk of adverse outcomes did not have a lot of influence, (b) active surveillance if risk of adverse outcomes had a lot of influence, or (c) radical prostatectomy or active surveillance if risk of adverse bowel outcomes had a lot of influence and risk of other adverse outcomes did not have a lot of influence. Data were analyzed using descriptive statistics and logistic regression. RESULTS: Of 224 participants, 137 (61%) pursued treatment concordant with preferences related to adverse treatment outcomes. Receipt of a decision aid did not predict higher odds of concordance. Low tumor risk and age ≥ 60 years predicted higher odds of concordance, while attributing a lot of influence to the impact of treatment on recreation predicted lower odds of concordance. CONCLUSIONS: Risk of potential adverse treatment outcomes may not be the foremost consideration of some patients with LPC. Assessment of the relative importance of patients' stated values and preferences is warranted in the setting of LPC treatment decision making. CLINICAL TRIAL REGISTRATION: NCT01844999 ( www. CLINICALTRIALS: gov ).

Decision support for men with prostate cancer: Concordance between treatment choice and tumor risk.

BACKGROUND: Decision support tools improve decisional conflict and elicit patient preferences related to prostate cancer treatment. It was hypothesized that men using the Personal Patient Profile-Prostate (P3P) would be more likely to pursue guideline-concordant treatment. METHODS: Men from a trial assessing the P3P decision support intervention were identified. The primary exposure was allocation to P3P (vs usual care), and the outcome was appropriate treatment per guidelines (eg, low risk = active surveillance). It was assessed whether providers recommended against any treatment options (ie, restricted). A multivariable model was fit for men with low-risk cancer that estimated the odds of the outcome of interest. RESULTS: This study identified 295 men in the cohort: 113 (38%) had low-risk disease, 119 (40%) had favorable intermediate-risk disease, and 63 (21%) had unfavorable intermediate-risk disease. Among low-risk patients, more men pursued active surveillance after using P3P whether they were given unrestricted (62% vs 54% with usual care; P = .54) or restricted options (71% vs 59% with usual care; P = .34). After adjustments, only Black race (odds ratio [OR], 0.31; 95% CI, 0.11-0.89) and restricted options (OR, 0.23; 95% CI, 0.08-0.65) had an inverse association with the receipt of surveillance for patients with low-risk prostate cancer. An impact associated with P3P versus usual care (OR, 0.89; 95% CI, 0.36-2.20) was not observed. CONCLUSIONS: Among men in a trial assessing a decision support tool, Black race and restricted treatment options were associated with less use of active surveillance for low-risk prostate cancer. Although the P3P instrument ameliorates decisional conflict, its use was not associated with more appropriate alignment of treatment with disease risk.

Loneliness and symptom burden in oncology patients during the COVID-19 pandemic.

BACKGROUND: Loneliness and social isolation are significant public health problems that are being exacerbated during the coronavirus disease 2019 pandemic. Little is known about the associations between loneliness and symptom burden in oncology patients before and during the pandemic. Study purposes include determining the prevalence of loneliness in a sample of oncology patients; evaluating for differences in demographic, clinical, and symptom characteristics between lonely and nonlonely patients; and determining which demographic, clinical, and symptom characteristics were associated with membership in the lonely group. METHODS: A convenience sample (n = 606) completed online surveys that evaluated the severity of loneliness, social isolation, and common symptoms (ie, anxiety, depression, fatigue, sleep disturbance, cognitive dysfunction, and pain) in oncology patients. Parametric and nonparametric tests were used to evaluate for differences in scores between the lonely and nonlonely groups. Logistic regression analysis was used to determine risk factors for membership in the loneliness group. RESULTS: Of the 606 patients, 53.0% were categorized in the lonely group. The lonely group reported higher levels of social isolation, as well as higher symptom severity scores for all of the symptoms evaluated. In the multivariate model, being unmarried, having higher levels of social isolation, as well as higher levels of anxiety and depressive symptoms were associated with membership in the lonely group. CONCLUSIONS: Study findings suggest that a significant number of oncology patients are experiencing loneliness, most likely as a result of mandate social distancing and isolation procedures. The symptom burden of these patients is extremely high and warrants clinical evaluation and interventions.

Perceived patient-centered communication, quality of life, and symptom burden in individuals with ovarian cancer.

OBJECTIVE: To describe perceptions of patient-centered communication (PCC); assess whether physician specialty, patient characteristics, or health system characteristics are associated with PCC; and identify associations between PCC, health-related quality of life (HRQoL), and symptom burden among individuals with ovarian cancer. METHODS: Cross-sectional, descriptive survey of English-speaking adults with ovarian cancer. PCC, HRQoL, and ovarian cancer symptom burden were assessed with the PCC-Ca-36, the FACT-G, and the FOSI-18, respectively. PCC-Ca-36 scores were summarized using descriptive statistics. Predictors of PCC-Ca-36, FACT-G, and FOSI-18 scores were identified using multiple linear regression. RESULTS: Participants (n = 176) had a mean age of 59.4 years (SD = 12.1). The majority (65.9%) had advanced-stage disease, while 42.0% were receiving treatment. The mean PCC-Ca-36 total score was 4.09 (SD = 0.78) out of a possible 5, indicating participants often perceived that clinicians engaged in PCC. Among the PCC functions, participants reported that clinicians least often enabled patient self-management (M = 3.65, SD = 0.99), responded to emotions (M = 3.84, SD = 1.04), and managed uncertainty (M = 3.91, SD = 0.93). In multivariable analyses, neither physician specialty nor patient and health system characteristics were significantly associated with overall PCC. Greater overall PCC predicted better overall HRQoL; better social/family, emotional, and functional well-being; and lower overall and physical symptom burden (all p ≤ 0.05). CONCLUSION: Greater PCC is significantly associated with better HRQoL and lower symptom burden among individuals with ovarian cancer. PRACTICE IMPLICATIONS: Promotion of PCC is a promising strategy to improve patient-reported outcomes in the ovarian cancer care setting.

Distinct sleep disturbance profiles among patients with gynecologic cancer receiving chemotherapy.

OBJECTIVE: In a sample of patients with gynecologic cancer receiving chemotherapy, we sought to identify subgroups of patients with distinct sleep disturbance profiles and assess for differences in patient characteristics and the severity of co-occurring symptoms among these subgroups. METHODS: Adults with gynecologic cancer (n = 232) completed questionnaires six times over two chemotherapy cycles. Sleep disturbance was assessed using the General Sleep Disturbance Scale (GSDS). Clinically meaningful sleep disturbance was defined as a GSDS total score of ≥43. Subgroups of patients with distinct sleep disturbance profiles were identified using latent profile analysis. Differences in patient characteristics and co-occurring symptoms were assessed using Chi-square, Kruskal Wallis, and one-way analysis of variance. RESULTS: Four distinct sleep disturbance profiles were identified: Low (18.5%), Moderate (43.6%), High (29.3%), and Very High (8.6%). Compared to the Low class, patients in the other three classes had lower functional status scores and higher levels of depressive symptoms, trait anxiety, and morning and evening fatigue. Compared to the Low class, patients in the Very High class were younger, had a higher body mass index, and were more likely to report a diagnosis of depression or back pain. CONCLUSIONS: Over 80% of the patients with gynecologic cancer reported sleep disturbance that persisted over two cycles of chemotherapy. Patients in the Very High class experienced problems with both sleep initiation and maintenance. Clinicians should routinely assess sleep disturbance alongside depression, anxiety, and fatigue. Interventions that target the underlying mechanisms of these co-occurring symptoms are warranted.

Oncology patients' perceptions of and experiences with COVID-19.

PURPOSE: No information is available on cancer patients' knowledge of and experiences with COVID-19. We undertook an evaluation of differences in COVID-19 symptom occurrence rates, COVID-19 testing rates, clinical care activities, knowledge of COVID-19, and use of mitigation procedures between patients who were and were not receiving active cancer treatment. METHODS: Patients enrolled were > 18 years of age; had a diagnosis of cancer; and were able to complete the emailed study survey online. RESULTS: Of the 174 patients who participated, 27.6% (n = 48) were receiving active treatment, 13.6% were unemployed because of COVID-19, 12.2% had been tested for COVID-19, and 0.6% had been hospitalized for COVID-19. Patients who were not on active treatment reported a higher mean number of COVID-19 symptoms (3.1 (± 4.2) versus 1.9 (± 2.6)), and patients who reported a higher number of COVID-19 symptoms were more likely to be tested. Over 55% of the patients were confident that their primary care provider could diagnose COVID-19, and the majority of the patients had high levels of adherence with the use of precautionary measures (e.g., social distancing, use of face coverings). CONCLUSION: The high level of COVID-19 symptoms and the significant overlap of COVID-19 and cancer-related symptoms pose challenges for clinicians who are assessing and triaging oncology patients for COVID-19 testing. For patients on active treatment, clinicians face challenges with how to assess and manage symptoms that, prior to COVID-19, would be ascribed to acute toxicities associated with cancer treatments or persistent symptoms in cancer survivors.

Informing models of cancer genetics care in the era of multigene panel testing with patient-led recommendations.

The study describes patient-reported experiences and recommendations to improve the genetic counseling and multigene panel testing (MGPT) process. A descriptive mixed-method study with concurrently collected and integrated qualitative and quantitative data was conducted. Eligible participants were English-speaking adults with a breast or gynecologic cancer diagnosis who had received genetic counseling and testing with a MGPT from one Comprehensive Cancer Center. Satisfaction with the genetic counseling, genetic knowledge using a recently validated scale (KnowGene), the multidimensional impact of cancer risk assessment (MICRA), family communication, and the association with demographic factors were evaluated. To supplement the large quantitative data set, qualitative focus group responses and open-ended text items were collected. Univariate and multivariable associations between each outcome of interest and personal characteristics were assessed. Qualitative data were content-analyzed. 603 participants completed the survey (48% response rate) and 10 individuals participated in the focus groups. Participants were mostly Caucasian, educated with a college degree or more, and female with median age 58 (24-91), and 78% of participants had a breast cancer diagnosis. Of all individuals undergoing genetic testing using a MGPT, 13% had a pathogenic variant identified, and 30% had a variant of uncertain significance (VUS). Overall, participants reported satisfaction with the genetic counseling and testing process (mean 36.9 [SD 4.7]). On average, participants had 7 incorrect answers out of 19 on the genetic knowledge scale (mean 12.3 [SD 3.4]). MICRA scores showed overall low levels of distress and uncertainty, as well as positive experiences, with wide variability (median 17 [0-84]). Age, marital status, education level, type of cancer diagnosis, and genetic testing results were significantly associated with outcomes. Most participants communicated genetic testing results to mainly female first-degree relatives. A wide range of individual preferences affecting overall satisfaction, or suggestions for improvement were shared. As new models of streamlined cancer genetic services are being clinically implemented, approaches should continue to assess and tailor the process based on patients' informational and emotional needs.

Threats of Bots and Other Bad Actors to Data Quality Following Research Participant Recruitment Through Social Media: Cross-Sectional Questionnaire.

BACKGROUND: Recruitment of health research participants through social media is becoming more common. In the United States, 80% of adults use at least one social media platform. Social media platforms may allow researchers to reach potential participants efficiently. However, online research methods may be associated with unique threats to sample validity and data integrity. Limited research has described issues of data quality and authenticity associated with the recruitment of health research participants through social media, and sources of low-quality and fraudulent data in this context are poorly understood. OBJECTIVE: The goal of the research was to describe and explain threats to sample validity and data integrity following recruitment of health research participants through social media and summarize recommended strategies to mitigate these threats. Our experience designing and implementing a research study using social media recruitment and online data collection serves as a case study. METHODS: Using published strategies to preserve data integrity, we recruited participants to complete an online survey through the social media platforms Twitter and Facebook. Participants were to receive $15 upon survey completion. Prior to manually issuing remuneration, we reviewed completed surveys for indicators of fraudulent or low-quality data. Indicators attributable to respondent error were labeled suspicious, while those suggesting misrepresentation were labeled fraudulent. We planned to remove cases with 1 fraudulent indicator or at least 3 suspicious indicators. RESULTS: Within 7 hours of survey activation, we received 271 completed surveys. We classified 94.5% (256/271) of cases as fraudulent and 5.5% (15/271) as suspicious. In total, 86.7% (235/271) provided inconsistent responses to verifiable items and 16.2% (44/271) exhibited evidence of bot automation. Of the fraudulent cases, 53.9% (138/256) provided a duplicate or unusual response to one or more open-ended items and 52.0% (133/256) exhibited evidence of inattention. CONCLUSIONS: Research findings from several disciplines suggest studies in which research participants are recruited through social media are susceptible to data quality issues. Opportunistic individuals who use virtual private servers to fraudulently complete research surveys for profit may contribute to low-quality data. Strategies to preserve data integrity following research participant recruitment through social media are limited. Development and testing of novel strategies to prevent and detect fraud is a research priority.

Correction to: Health Care Provider Perceptions of Caring for Individuals with Inherited Pancreatic Cancer Risk.

The original version of this article unfortunately contained a mistake. The name of "Matthew Yurgelun" is now corrected in the author group of this article.

Health Care Provider Perceptions of Caring for Individuals with Inherited Pancreatic Cancer Risk.

Recent national guidelines recommend genetic risk assessment for all patients diagnosed with pancreatic cancer, yet individuals with pancreatic cancer obtain genetic testing at suboptimal rates. Both patient and provider factors play a role in adherence to genetic testing recommendations. The purpose of this study was to understand health care provider perspectives of caring for patients with inherited pancreatic cancer risk. The study was a cross-sectional mixed method study utilizing a qualitative interview and a survey. The study sample included health care providers who provide care for patients with pancreatic cancer or inherited risk. Qualitative data were analyzed using content analysis, while quantitative data were summarized using descriptive statistics. Thirty participants had complete interview data and 29 completed a survey. The sample was comprised of physicians (n = 17), genetic counselors (n = 6), nurses (n = 3), and social workers (n = 3). Respondents were less confident in their ability to identify patients with inherited pancreatic cancer risk compared with other hereditary cancer syndromes. Several challenges were identified including the pancreatic cancer illness trajectory; lack of evidence-based practice guidelines; difficulty interpreting genetic test results; and difficulty following up on referrals. Participants perceived a lack of educational resources for patients with inherited pancreatic cancer risk. Health care providers who care for individuals with inherited pancreatic cancer risk face challenges that are distinct from those encountered during the care of individuals for other hereditary cancers. There is a need for additional resources at the patient-, provider-, and system-level.

Item response theory analysis and properties of decisional conflict scales: findings from two multi-site trials of men with localized prostate cancer.

BACKGROUND: Decisional conflict is associated with decision quality and may affect decision outcomes. In the health sciences literature, the Decisional Conflict Scale is widely used to measure decisional conflict, yet limited research has described the psychometric properties of the Decisional Conflict Scale subscales and of the low literacy version of the scale. The purpose of this secondary data analysis was therefore to examine properties of the original (DCS-12) and low literacy (LL DCS-10) Decisional Conflict Scales using Classical Measurement Theory and Item Response Theory. METHODS: Data from two multi-site trials of men with prostate cancer were used to analyze the DCS-12, LL DCS-10, and an aggregated DCS-12 dataset in which five response options were aggregated into three. Internal consistency was estimated with Cronbach's alphas. Subscale correlations were evaluated with Pearson's correlation coefficient. Item difficulty, item discrimination, and test information were evaluated using Graded Response Modeling (GRM). The likelihood ratio test guided model selection. RESULTS: Cronbach's alphas for the total scales and three of four subscales were ≥ 0.85. Alphas ranged from 0.34-0.57 for the support subscales. Subscale correlations ranged from 0.42-0.71 (P < 0.001). Items on the DCS-12 exhibited the widest range of difficulty. Two items on the support subscale had low to moderate discrimination and contributed little information. Only the DCS-12 was informative across the full range of decisional conflict values. CONCLUSIONS: Lack of precision in the support subscale raises concerns about subscale validity. The DCS-12 is most capable of discriminating between respondents with high and low decisional conflict. Evaluation of interventions to reduce decisional conflict must consider the above findings.

Patient-centered research priorities in ovarian cancer: A systematic review of potential determinants of guideline care.

OBJECTIVE: To (a) determine what is known about the individual and contextual factors that may influence whether a woman with ovarian cancer receives guideline care, and (b) identify patient-centered research priorities in ovarian cancer. METHODS: A systematic review of the PubMed, MEDLINE, CINAHL Complete, and PsycInfo online databases. Eligible articles were published in English, described original research, and either (a) identified factors associated with the receipt of guideline care for ovarian cancer, or (b) described treatment decision making by women with ovarian cancer. Studies were excluded in which women with ovarian cancer did not comprise the entire sample of patient participants. Data were collected in accordance with Garrard's Matrix Method. Study quality was evaluated using the QualSyst tool for evaluating primary research papers. Relevant study findings were imported into NVivo Pro 11 for qualitative synthesis. RESULTS: The search strategy yielded 502 unique citations, of which 78 full-text articles were reviewed. Thirty-three articles met the criteria for inclusion. Study quality was high overall. Factors associated with the receipt of guideline care included race and ethnicity, socioeconomic status, insurance type, age, comorbidity, disease stage, tumor characteristics, hospital volume, hospital type, physician volume, and geographic location. Influences on treatment decision making among women with ovarian cancer included the desire to prolong survival, the patient-provider relationship, perceived ability to participate in the treatment decision, values and preferences, information needs, side effects, cost of care, and past experiences with chemotherapy. CONCLUSIONS: There is a need for further research that examines ovarian cancer treatment decision making from the perspective of the patient. Priority topics for future research may include the experiences of diverse women receiving treatment for ovarian cancer and the role of shared decision making with providers, referral networks, and practice patterns in the delivery of guideline care.