Abstract The Functional Assessment of Chronic Illness Therapy (FACIT) system provides a general, multidimensional measure of health-related quality of life (FACT-G) that can be augmented with disease ...or symptom-specific subscales. The 19-item palliative care subscale of the FACIT system has undergone little psychometric evaluation to date. The aim of this paper is to report the internal consistency, factor structure, and construct validity of the instrument using the palliative care subscale (FACIT-Pal). Two hundred fifty-six persons with advanced cancer in a randomized trial testing a palliative care psychoeducational intervention completed the 46-item FACIT-Pal at baseline. Internal consistency was greater than 0.74 for all subscales and the total score. Seventeen of the 19 palliative care subscale items loaded onto the four-factor solution of the established core measure (FACT-G). As hypothesized, total scores were correlated with measures of symptom intensity ( r = −0.73, P < 0.001) and depression ( r = −0.75, P < 0.001). The FACIT-Pal was able to discriminate between participants who died within three months of completing the baseline and participants who lived for at least one year after completing the baseline assessment ( t = −4.05, P < 0.001). The functional well-being subscale discriminated between participants who had a Karnofsky performance score of 70 and below and participants with a Karnofsky performance score of 80 and above ( t = 3.40, P < 0.001). The findings support the internal consistency reliability and validity of the FACIT-Pal as a measure of health-related quality of life for persons with advanced cancer.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NLZOH, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UILJ, UL, UM, UPCLJ, UPUK, ZAGLJ, ZRSKP
Purpose
This study investigated the supportive care needs of a sample of low-income Latina breast cancer survivors.
Methods
Ninety-nine Spanish-speaking breast cancer survivors who self-identified as ...Latina and reported an income below the US Census Bureau low-income threshold were recruited from the oncology clinic of a major public safety net hospital. Eligible participants completed the supportive care needs survey (SCNS-SF34) and a demographic questionnaire.
Results
Ninety-three percent of respondents had unmet needs. The majority of frequently reported unmet needs involved (1) access to and delivery of health-related information and (2) physical function. These findings appear to contrast with those of other studies of supportive care needs in heterogeneous cancer survivors, most of which describe psychological concerns as most urgent.
Conclusions
Participants espoused information-related needs with a higher frequency than many other samples of cancer survivors. This study population may also require a particularly high level of assistance with overcoming participation restrictions. Further research is needed to understand these discrepancies and to address unmet needs across all domains.
The evidence base for interventions that support the employment goals of cancer survivors is growing but inconclusive. As the first step in initiating a community-engaged program of research aimed at ...developing and testing interventions to support the employment goals of cancer survivors, 23 cancer survivors, 17 healthcare providers, and 5 employers participated in individual interviews to elicit perceptions regarding local challenges and resources related to work maintenance and optimization within the context of cancer treatment. Interviews were recorded and transcribed verbatim. A thematic analysis was conducted to identify cross-cutting experiences that were voiced by all three types of participants. Three themes were found in the data: (1) the onus for identifying and articulating work-related issues is upon the cancer survivor; (2) the main support offered to cancer survivors involved time away from work and flexibility with scheduling work and treatment activities; and (3) participants voiced a lack of information regarding one or more aspects related to supporting employment goals of cancer survivors. Supportive resources designed for cancer survivors, employers, and/or healthcare providers are needed to help cancer survivors optimize their employment situations.
Objective
The purpose of this study was to explore the feasibility, acceptability and perceived utility of the provision of a wearable fitness device and an exercise prescription from a surgeon, ...prior to surgery for lung cancer.
Methods
A single‐arm, pre–post feasibility study was conducted with 30 participants scheduled for surgery to treat stage I, II or III lung cancer. Participants were given a Garmin Vivoactive HR device and a prescription for 150 min of moderately to vigorous exercise per week. Participants completed assessments on four occasions and completed a semi‐structured interview on two occasions. Descriptive statistics were used to assess the feasibility and acceptability of study procedures, including synchronising the Garmin device and engaging in study assessments.
Results
Seventy‐nine per cent of enrolled participants completed the pre‐operative study activities. Seventy‐one per cent of enrolled participants successfully synchronised their device during the pre‐operative period. Data were transmitted from the device to the study team for an average of 70% of the pre‐operative days.
Conclusion
This pilot study demonstrated the feasibility and acceptability of a pre‐operative exercise program for patients scheduled to undergo surgery for lung cancer.
Trial Registration
The study protocol was registered with ClinicalTrials.gov prior to the initiation of participant recruitment (NCT03162718).
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK
Virtual Learning Collaboratives (VLC), learning communities focused on a common purpose, are used frequently in healthcare settings to implement best practices. Yet, there is limited research testing ...the effectiveness of this approach compared to other implementation strategies. This study evaluates the effectiveness of a VLC compared to Technical Assistance (TA) among community oncology practices implementing ENABLE (Educate, Nurture, Advise, Before Life Ends), an evidence-based, early palliative care telehealth, psycho-educational intervention for patients with newly diagnosed advanced cancer and their caregivers.
Using Reach, Effectiveness, Adoption, Implementation, Maintenance (RE-AIM) and Proctor's Implementation Outcomes Frameworks, this two-arm hybrid type-III cluster-randomized controlled trial (RCT) will compare two implementation strategies, VLC versus TA, among the 48 National Cancer Institute Community Oncology Research Program (NCORP) practice clusters that have not historically provided palliative care to all patients with advanced cancer. Three cohorts of practice clusters will be randomized to the study arms. Each practice cluster will recruit 15-27 patients and a family caregiver to participate in ENABLE. The primary study outcome is ENABLE uptake (patient level), i.e., the proportion of eligible patients who complete the ENABLE program (receive a palliative care assessment and complete the six ENABLE sessions over 12 weeks). The secondary outcome is overall program implementation (practice cluster level), as measured by the General Organizational Index at baseline, 6, and 12 months. Exploratory aims assess patient and caregiver mood and quality of life outcomes at baseline, 12, and 24 weeks. Practice cluster randomization will seek to keep the proportion of rural practices, practice sizes, and minority patients seen within each practice balanced across the two study arms.
This study will advance the field of implementation science by evaluating VLC effectiveness, a commonly used but understudied, implementation strategy. The study will advance the field of palliative care by building the capacity and infrastructure to implement an early palliative care program in community oncology practices.
Clinicaltrials.gov . NCT04062552; Pre-results. Registered: August 20, 2019. https://clinicaltrials.gov/ct2/show/NCT04062552?term=NCT04062552&draw=2&rank=1.
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IZUM, KILJ, NUK, PILJ, PNG, SAZU, UL, UM, UPUK
To solicit expert opinions and develop consensus around the research that is needed to improve cancer rehabilitation for older adults.
Delphi methods provided a structured process to elicit and ...prioritize research questions from national experts.
National, Web-based survey.
Members (N=32) of the American Congress of Rehabilitation Medicine completed at least 1 of 3 investigator-developed surveys.
Not applicable.
In the first survey, participants identified up to 5 research questions that needed to be answered to improve cancer rehabilitation for older adults. In 2 subsequent surveys, participants viewed the compilation of questions, rated the importance of each question, and identified the 5 most important questions. This generated priority scores for each question. Consensus scores were created to describe the degree of agreement around the priority of each question.
Highest priority research concerns the epidemiology and measurement of function and disability in older adult cancer survivors; the effects of cancer rehabilitation interventions on falls, disability, participation, survival, costs, quality of care, and health care utilization; and testing models of care that facilitate referrals from oncology to rehabilitation providers as part of coordinated, multicomponent care.
A multipronged approach is needed to fill these gaps, including targeted funding opportunities developed with an advisory panel of cancer rehabilitation experts, development of a research network to facilitate novel collaborations and grant proposals, and coordinated efforts of clinical groups to advocate for funding, practice change, and policy change.
The expressive mask of Parkinson's disease, a reduced spontaneity, intensity, and fluidity of facial, bodily, and vocal expression, jeopardizes interpersonal interaction and quality of life. ...Observers have difficulty perceiving the “real” person behind the mask, leading to failed communication and misunderstanding. A social ecological explanation of this difficulty is that observers have learned in their daily social lives, and quite appropriately so, that expressive behavior reveals meaningful information about character. The premise of this study was that health practitioners, especially novices, would bring into the clinic their everyday perceptual tendencies related to deciphering character. The study examined novice and expert practitioners’ impressions of the personality of patients with Parkinson's disease who were videotaped during a healthcare interview. It was found that practitioners, especially novices, appeared to be overly sensitive to expressive masking when forming impressions about patient extraversion. They incorrectly perceived patients with more masking to be less extraverted than patients with less masking. Novice practitioners were particularly inaccurate in their impressions of neuroticism compared to experts. Novices incorrectly perceived patients with more masking as being more neurotic, whereas experts tended to be sensitive to valid cues of neuroticism. Practitioners’ impressions of patient conscientiousness were not sensitive to masking and were highly accurate.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UL, UM, UPCLJ, UPUK, ZRSKP
We conducted a randomized controlled trial (RCT) of an early palliative care intervention (ENABLE: Educate, Nurture, Advise, Before Life Ends) for persons with advanced cancer and their family ...caregivers. Not all patient participants had a caregiver coparticipant; hence, we explored whether there were relationships between patient survival, having an enrolled caregiver, and caregiver outcomes prior to death. One hundred and twenty‐three patient‐caregiver dyads and 84 patients without a caregiver coparticipant participated in the ENABLE early versus delayed (12 weeks later) RCT. We collected caregiver quality‐of‐life (QOL), depression, and burden (objective, stress, and demand) measures every 6 weeks for 24 weeks and every 3 months thereafter until the patient's death or study completion. We conducted survival analyses using log‐rank and Cox proportional hazards models. Patients with a caregiver coparticipant had significantly shorter survival (Wald = 4.31, HR = 1.52, CI: 1.02–2.25, P = 0.04). After including caregiver status, marital status (married/unmarried), their interaction, and relevant covariates, caregiver status (Wald = 6.25, HR = 2.62, CI: 1.23–5.59, P = 0.01), being married (Wald = 8.79, HR = 2.92, CI: 1.44–5.91, P = 0.003), and their interaction (Wald = 5.18, HR = 0.35, CI: 0.14–0.87, P = 0.02) were significant predictors of lower patient survival. Lower survival in patients with a caregiver was significantly related to higher caregiver demand burden (Wald = 4.87, CI: 1.01–1.20, P = 0.03) but not caregiver QOL, depression, and objective and stress burden. Advanced cancer patients with caregivers enrolled in a clinical trial had lower survival than patients without caregivers; however, this mortality risk was mostly attributable to higher survival by unmarried patients without caregivers. Higher caregiver demand burden was also associated with decreased patient survival.
Advanced cancer patients with caregivers enrolled in a trial had lower survival than patients without caregiver coparticipants although this mortality risk was mostly attributable to higher survival by unmarried patients without caregivers. Higher caregiver demand burden was also associated with decreased patient survival.
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FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK
The purpose of the present study was to conduct a process evaluation of intervention delivery for a randomized controlled trial (RCT) conducted during the COVID-19 pandemic (NCT03915548). The RCT ...tested the effects of a telephone-delivered behavioral intervention on changes in breast cancer survivors' satisfaction with social roles and activities, as compared to an attention control condition. This process evaluation examined (a) fidelity monitoring scores; (b) participants' perceived benefit ratings for gaining confidence, reducing distress, adjusting habits and routines, setting goals, and increasing exercise; and (c) field notes, email communications, and transcripts of coach supervision and debriefing sessions. The behavioral and attention control conditions were delivered with a high degree of fidelity (global quality rating score for the BA/PS condition was
= 4.6 (
= 0.6) and
= 4.9 (
= 0.3) for the attention control condition, where "5" is the highest rating). The behavioral intervention participants perceived greater benefits than the control participants pertaining to goal setting,
(248) = 5.73,
= <0.0001, adjusting habits and routines,
(248) = 2.94,
= 0.0036, and increasing exercise,
(248) = 4.66,
= <0.0001. Moreover, coaches' perceptions regarding the behavioral intervention's therapeutic aspects aligned with the study's a priori conceptual model including the use of a structured process to set small, observable goals and facilitate the independent use of problem-solving skills. However, coaches also noted that aspects of the attention control condition, including the perceived relevance of the educational content and opportunities for social support, may have made it more therapeutically potent than intended. The pandemic may have affected the activity goals behavioral intervention participants could set as well as augmented the relevancy of social support provided in both conditions.
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IZUM, KILJ, NUK, PILJ, PNG, SAZU, UL, UM, UPUK, VSZLJ
In this pilot study of a home-based occupational therapy intervention intended to reduce disability and improve quality of life, our objective was to identify rates of goal attainment and patterns of ...goal adjustment of participants.
Thirty older adults with cancer were randomized to the intervention arm, and 24 participants identified goals and completed the six-session intervention. An exploratory content analysis of qualitative and quantitative session data was performed.
Participants set 63 6-wk goals and attained 62% of them. Most of the goals addressed walking (28%), sedentary leisure (24%), exercising (16%), or instrumental activities of daily living (14%). When 6-wk goals were not attained (n = 24), there were 10 instances of goal disengagement and 14 instances of goal reengagement.
Although most participants were able to meet their goals, many also changed their goals and priorities after reflection and attempts to resume or initiate meaningful activities.
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