Kathleen Doyle Lyons

Family Caregiver Depressive Symptom and Grief Outcomes From the ENABLE III Randomized Controlled Trial

CONTEXTnLittle is known about whether early palliative care (EPC) support for family caregivers (CGs) impacts depressive symptoms and grief after care recipients die.nnnOBJECTIVESnTo assess after-death CG depressive symptom and grief scores for early compared to delayed group CGs.nnnMETHODSnWe conducted a randomized controlled trial (10/2010-9/2013) of an EPC telehealth intervention for CGs (nxa0=xa0123) initiated at the time of care recipients advanced cancer diagnosis (early group) or 12xa0weeks later (delayed group) in a rural comprehensive cancer center, affiliated clinics, and a Veterans Administration medical center. The ENABLE [Educate, Nurture, Advise, Before Life Ends] CG intervention consisted of three weekly sessions, monthly follow-up, and a bereavement call. CGs completed the Center for Epidemiological Study-Depression (CES-D) scale and the Prigerson Inventory of Complicated Grief-Short Form (PG13) 8-12xa0weeks after care recipients deaths. Crude and covariate-adjusted between-group differences were estimated and tested using general linear models.nnnRESULTSnFor care recipients who died (nxa0=xa070), 44 CGs (early: nxa0=xa019; delayed: nxa0=xa025) completed after-death questionnaires. Mean depressive symptom scores (CES-D) for the early group was 14.6 (SDxa0=xa010.7) and for the delayed group was 17.6 (SDxa0=xa011.8). Mean complicated grief scores (PG13) for the early group was 22.7 (SDxa0=xa04.9) and for the delayed group was 24.9 (SDxa0=xa06.9). Adjusted between-group differences were not statistically significant (CES-D: dxa0=xa00.07, Pxa0=xa00.88; PG13: dxa0=xa0-0.21, Pxa0=xa00.51).nnnCONCLUSIONnCGs depressive symptom and complicated grief scores 8-12xa0weeks after care recipients deaths were not statistically different based on the timing of EPC support. The impact of timing of CG EPC interventions on CGs bereavement outcomes requires further investigation.

Delphi Study to Determine Rehabilitation Research Priorities for Older Adults With Cancer

OBJECTIVEnTo solicit expert opinions and develop consensus around the research that is needed to improve cancer rehabilitation for older adults.nnnDESIGNnDelphi methods provided a structured process to elicit and prioritize research questions from national experts.nnnSETTINGnNational, Web-based survey.nnnPARTICIPANTSnMembers (N=32) of the American Congress of Rehabilitation Medicine completed at least 1 of 3 investigator-developed surveys.nnnINTERVENTIONSnNot applicable.nnnMAIN OUTCOME MEASURESnIn 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.nnnRESULTSnHighest 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.nnnCONCLUSIONSnA 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.

Cognitive and Affective Representations of Active Surveillance as a Treatment Option for Low-Risk Prostate Cancer

Benefits of early diagnosis and treatment remain debatable for men with low-risk prostate cancer. Active surveillance (AS) is an alternative to treatment. The goal of AS is to identify patients whose cancer is progressing rapidly while avoiding treatment in the majority of patients. The purpose of this study was to explore cognitive and affective representations of AS within a clinical environment that promotes AS a viable option for men with low-risk prostate cancer. Participants included patients for whom AS and active treatment were equally viable options, as well as practitioners who were involved in consultations for prostate cancer. Data were generated from semistructured interviews and audits of consultation notes and were analyzed using thematic analysis. Nineteen patients and 16 practitioners completed a semistructured interview. Patients generally viewed AS as a temporary strategy that was largely equated with inaction. There was variation in the degree to which inaction was viewed as warranted or favorable. Patient perceptions of AS were generally malleable and able to be influenced by information from trusted sources. Encouraging slow deliberation and multiple consultations may facilitate greater understanding and acceptance of AS as a viable treatment option for low-risk prostate cancer.

The role of a palliative care intervention in moderating the relationship between depression and survival among individuals with advanced cancer.

Objective: Randomized controlled trials (RCTs) of early palliative care interventions in advanced cancer have positively impacted patient survival, yet the mechanisms remain unknown. This secondary analysis of 2 RCTs assessed whether an early palliative care intervention moderates the relationship between depressive symptoms and survival. Method: The relationships among mood, survival, and early palliative care intervention were studied among 529 advanced cancer patients who participated in 2 RCTs. The first (N = 322) compared intervention versus usual care. The second (N = 207) compared early versus delayed intervention (12 weeks after enrollment). The interventions included an in-person consultation, weekly nurse coach-facilitated phone sessions, and monthly follow-up. Mood was measured using the Center for Epidemiologic Studies-Depression (CES-D) scale. Cox proportional hazard analyses were used to examine the effects of baseline CES-D scores, the intervention, and their interaction on mortality risk while controlling for demographic variables, cancer site, and illness severity. Results: The combined sample was 56% male (M = 64.7 years). Higher baseline CES-D scores were significantly associated with greater mortality risk (hazard ratio [HR] = 1.042, 95% confidence interval [CI] [1.017, 1.067], p = .001). However, participants with higher CES-D scores who received the intervention had a lower mortality risk (HR = .963, CI [0.933, 0.993], p = .018) even when controlling for demographics, cancer site, and illness-related variables. Conclusion: This study is the first to demonstrate that patients with advanced cancer who also have depressive symptoms benefit the most from early palliative care. Future research should be devoted to exploring the mechanisms responsible for these relationships.

Qualitative insights into how men with low-risk prostate cancer choosing active surveillance negotiate stress and uncertainty.

BackgroundActive surveillance is a management strategy for men diagnosed with early-stage, low-risk prostate cancer in which their cancer is monitored and treatment is delayed. This study investigated the primary coping mechanisms for men following the active surveillance treatment plan, with a specific focus on how these men interact with their social network as they negotiate the stress and uncertainty of their diagnosis and treatment approach.MethodsThematic analysis of semi-structured interviews at two academic institutions located in the northeastern US. Participants include 15 men diagnosed with low-risk prostate cancer following active surveillance.ResultsThe decision to follow active surveillance reflects the desire to avoid potentially life-altering side effects associated with active treatment options. Men on active surveillance cope with their prostate cancer diagnosis by both maintaining a sense of control over their daily lives, as well as relying on the support provided them by their social networks and the medical community. Social networks support men on active surveillance by encouraging lifestyle changes and serving as a resource to discuss and ease cancer-related stress.ConclusionsSupport systems for men with low-risk prostate cancer do not always interface directly with the medical community. Spousal and social support play important roles in helping men understand and accept their prostate cancer diagnosis and chosen care plan. It may be beneficial to highlight the role of social support in interventions targeting the psychosocial health of men on active surveillance.

Implementation of Multicolor Melt Curve Analysis for High-Risk Human Papilloma Virus Detection in Low- and Middle-Income Countries: A Pilot Study for Expanded Cervical Cancer Screening in Honduras

Purpose Cervical cancer is a leading cause of cancer-related mortality in low- and middle-income countries (LMICs) and screening in LMICs is extremely limited. We aimed to implement on-site high-risk human papillomavirus (hrHPV) DNA testing in cohorts of women from an urban factory and from a rural village. Methods A total of 802 women were recruited for this study in partnership with La Liga Contra el Cancer through the establishment of women’s health resource fairs at two locations in Honduras: a textile factory (n = 401) in the city of San Pedro Sula and the rural village of El Rosario (n = 401) in Yoro. Participants received a routine cervical examination during which three sterile cytobrushes were used to collect cervical samples for testing. hrHPV genotyping was performed using a hrHPV genotyping assay and a real-time polymerase chain reaction instrument. Results hrHPV status across all participants at both sites was 13% hrHPV positive and 67% hrHPV negative. When hrHPV status was compared across all three testing sites, hrHPV-positive rates were approximately equal among the factory (13%), village (12%), and confirmatory testing at Dartmouth-Hitchcock Medical Center (Lebanon, NH; 14%). hrHPV genotype was compared across sites, with HPV16 showing the highest infection rate (15%), followed by HPV59 (12%), and HPV68 (11%). There was a low prevalence of HPV18 observed in both populations compared with the hrHPV-positive population in the United States. Conclusion In collaboration with oncologists and pathologists from La Liga Contra el Cancer, we were able to provide a continuum of care once health-fair testing was performed. We established a method and implementation plan for hrHPV testing that is sustainable in LMICs.

Moving beyond symptom management towards cancer rehabilitation for older adults: Answering the 5W's

Older adults with cancer are quickly becoming the largest group of cancer survivors. Chronological age is a poor predictor of cancer treatment outcomes and of the need for rehabilitation services. While newer symptom management systems and assessments are slowly becoming used in the clinic to improve communication between providers and survivors, such assessments are rarely used to trigger a referral to rehabilitation. Cancer rehabilitation for older adults with cancer has the potential to improve the quality of life and decrease disability caused by cancer and its treatments. One barrier to referral to cancer rehabilitation remains an understanding of what cancer rehabilitation is, and who, when, where, and why to refer to rehabilitation services. This report utilizes examples of three popular geriatric, distress and symptom measures to help answer these questions.

Supportive care priorities of low-income Latina breast cancer survivors

PurposeThis study investigated the supportive care needs of a sample of low-income Latina breast cancer survivors.MethodsNinety-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.ResultsNinety-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.ConclusionsParticipants 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.

Content Analysis of a Participant-Directed Intervention to Optimize Activity Engagement of Older Adult Cancer Survivors

Many older adult cancer survivors reduce their activity level during and after cancer treatment. Occupational therapy interventions need to flexibly address various obstacles to occupational engagement that survivors may face. The aim of this analysis was to describe the content of a participant-directed occupational therapy intervention for older adults with cancer. Content analysis was used to describe the treatment session data from the experimental arm of a pilot randomized controlled trial in terms of activities addressed, obstacles reported, and treatment strategies utilized. Participants predominantly used the intervention to increase exercise engagement or address instrumental activities of daily living. The most common obstacles to occupational engagement included fatigue, finding time, weather, and pain. Regarding treatment strategies, 77% of participants chose to practice the activity with the occupational therapist, 42% requested a piece of equipment, and 11% modified the environment to increase activity engagement. Overall, the participant-directed intervention appears flexible enough to address various activities and obstacles to occupational engagement.

The association of health-related quality of life with unmet supportive care needs and sociodemographic factors in low-income Latina breast cancer survivors: a single-centre pilot study

Abstract Purpose: Determine correlations between health-related quality of life (HRQOL), supportive care need, and sociodemographic factors in low-income Latina breast cancer survivors. Methods: A descriptive, survey-based, cross-sectional study was completed with 102 low-income Latina breast cancer survivors at a major public safety net hospital. Correlation coefficients were calculated between number of unmet supportive care needs (per Supportive Care Needs Survey), HRQOL (per SF-36), and sociodemographic variables. Results: Unmet supportive care needs were correlated with lower HRQOL in all domains (ru2009>u2009−0.40; pu2009<u20090.0001). Lower income was significantly associated with lower HRQOL (ru2009>u20090.21; pu2009<u20090.05) and more supportive care needs (ru2009=u2009−0.22; pu2009<u20090.05). Multimorbidity was significantly associated with decreased HRQOL (ru2009>u2009−0.23; pu2009<u20090.05) and greater supportive care need (ru2009=u20090.19; pu2009<u20090.05). Conclusions: Identifying and addressing unmet supportive care needs may improve HRQOL in low-income Latina breast cancer survivors. Rehabilitation interventions that address barriers to accessing supportive care related to low SES and multimorbidity may also improve health outcomes in this population. The dual effect of multimorbidity on both quality of life and level of supportive care need in this population warrants further investigation. Implications for rehabilitation Screening for unmet supportive care needs may be an important step in improving health-related quality of life during cancer rehabilitation. Challenges accompanying multimorbidity and lower socioeconomic status may prevent low-income cancer patients from accessing adequate supportive care. Rehabilitation interventions for socioeconomically disadvantaged cancer survivors should compensate for both socioeconomic status and the presence of comorbidities in order to reduce disparities in quality of life during survivorship.