Exploring Acceptability of Employment Interventions to Support People Living With Cancer: Qualitative Study of Cancer Survivors, Health Care Providers, and Employers.

BACKGROUND: Employment contributes to cancer survivors' quality of life, but this population faces a variety of challenges when working during and after treatment. Factors associated with work outcomes among cancer survivors include disease and treatment status, work environment, and social support. While effective employment interventions have been developed in other clinical contexts, existing interventions have demonstrated inconsistent effectiveness in supporting cancer survivors at work. We conducted this study as a preliminary step toward program development for employment support among survivors at a rural comprehensive cancer center. OBJECTIVE: We aimed (1) to identify supports and resources that stakeholders (cancer survivors, health care providers, and employers) suggest may help cancer survivors to maintain employment and (2) to describe stakeholders' views on the advantages and disadvantages of intervention delivery models that incorporate those supports and resources. METHODS: We conducted a descriptive study collecting qualitative data from individual interviews and focus groups. Participants included adult cancer survivors, health care providers, and employers living or working in the Vermont-New Hampshire catchment area of the Dartmouth Cancer Center in Lebanon, New Hampshire. We grouped interview participants' recommended supports and resources into 4 intervention delivery models, which ranged on a continuum from less to more intensive to deliver. We then asked focus group participants to discuss the advantages and disadvantages of each of the 4 delivery models. RESULTS: Interview participants (n=45) included 23 cancer survivors, 17 health care providers, and 5 employers. Focus group participants (n=12) included 6 cancer survivors, 4 health care providers, and 2 employers. The four delivery models were (1) provision of educational materials, (2) individual consultation with cancer survivors, (3) joint consultation with both cancer survivors and their employers, and (4) peer support or advisory groups. Each participant type acknowledged the value of providing educational materials, which could be crafted to improve accommodation-related interactions between survivors and employers. Participants saw usefulness in individual consultation but expressed concern about the costs of program delivery and potential mismatches between consultant recommendations and the limits of what employers can provide. For joint consultation, employers liked being part of the solution and the possibility of enhanced communication. Potential drawbacks included additional logistical burden and its perceived generalizability to all types of workers and workplaces. Survivors and health care providers viewed the efficiency and potency of peer support as benefits of a peer advisory group but acknowledged the sensitivity of financial topics as a possible disadvantage of addressing work challenges in a group setting. CONCLUSIONS: The 3 participant groups identified both common and unique advantages and disadvantages of the 4 delivery models, reflecting varied barriers and facilitators to their potential implementation in practice. Theory-driven strategies to address implementation barriers should play a central role in further intervention development.

Consensus-Building efforts to identify best tools for screening and assessment for supportive services in oncology.

Purpose: To build consensus around an optimal patient-reported outcome measure of cancer symptoms and patient needs to facilitate patient-provider communication and trigger referrals to supportive services.Methods and materials: The Grid-Enabled Measures platform was used to crowdsource and facilitate collaboration to achieve consensus. Respondents were invited to nominate and independently rate the usefulness of measures that: (1) have been actively used at a healthcare institution, (2) have a multiple choice or yes/no type format, (3) are applicable to adults with cancer, (4) are patient-reported, and 5) have psychometric data if possible. Discussion boards within the GEM workspace allowed respondents to identify barriers to implementing patient assessment and referral systems.Results: 166 individuals from various disciplines from 25 organizations participated. Six instruments were nominated, and 553 rating surveys were submitted. The three most highly-rated overall instruments were the Distress Thermometer, the James Supportive Case Screening, and the Functional Assessment of Cancer Therapy-General. Participants noted that wide-scale implementation of this process requires both identifying problems and providing clinicians with algorithms to facilitate appropriate referrals.Conclusions: Consensus reported three most highly-related measures as optimal for comprehensive screening and identification for referral by assessing multiple domains of functioning and quality of life.Implications for RehabilitationGaining consensus on the best patient reported outcome measures is an important step towards improving access to cancer rehabilitation services.A consensus agreed on several measures to use for cancer rehabilitation screening. Functional Assessment of Cancer Therapy-General, National Comprehensive Cancer. Network Distress Thermometer and the James Instrument.The selected measures do not put undue burden on clinicians and patients.

Employment Concerns and Associated Impairments of Women Living With Advanced Breast Cancer.

OBJECTIVE: To describe the clinical and personal factors associated with work status, distress regarding work status, and the desire to resume employment and receive help to address work challenges reported by women living with advanced breast cancer. DESIGN: Descriptive statistics and univariate and multivariate logistic regression were used to explore factors related to employment challenges in this secondary analysis of an existing dataset. SETTING: Participants were recruited from an outpatient oncology clinic specializing in breast cancer at a free-standing comprehensive cancer center. PARTICIPANTS: English-speaking women older than 18 years living with metastatic breast cancer with intact mental status and Karnofsky Performance Scale scores between 40 and 90 (N=163). INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: Dependent variables included (1) continued employment if working at the time of cancer diagnosis; (2) interest in resuming employment if working at the time of cancer diagnosis and now no longer working; (3) distress regarding vocational limitations; and (4) interest in receiving help to resume work. RESULTS: Seventy percent of the sample was working before their cancer diagnosis (n=114), yet only 21% (n=35) was working when surveyed. Lower functional status and higher symptom burden were strongly and consistently associated with lack of work retention, distress related to vocational role limitations, and desire for help in addressing limitations (all P values<.01). CONCLUSIONS: With more people living longer with metastatic cancer, there is a need to assess and support survivors' desire and capacity to maintain employment. Participants' reduced employment was strongly associated with potentially actionable clinical targets (ie, higher symptom burden and lower functional status) that fall within cancer rehabilitation's mission.

Oncologists' perspectives on concurrent palliative care in a National Cancer Institute-designated comprehensive cancer center.

OBJECTIVE: The purpose of this study was to understand oncology clinicians' perspectives about the care of advanced cancer patients following the completion of the ENABLE II (Educate, Nurture, Advise, Before Life Ends) randomized clinical trial (RCT) of a concurrent oncology palliative care model. METHOD: This was a qualitative interview study of 35 oncology clinicians about their approach to patients with advanced cancer and the effect of the ENABLE II RCT. RESULTS: Oncologists believed that integrating palliative care at the time of an advanced cancer diagnosis enhanced patient care and complemented their practice. Self-assessment of their practice with advanced cancer patients comprised four themes: (1) treating the whole patient, (2) focusing on quality versus quantity of life, (3) "some patients just want to fight," and (4) helping with transitions; timing is everything. Five themes comprised oncologists' views on the complementary role of palliative care: (1) "refer early and often," (2) referral challenges: "Palliative" equals "hospice"; "Heme patients are different," (3) palliative care as consultants or co-managers, (4) palliative care "shares the load," and (5) ENABLE II facilitated palliative care integration. SIGNIFICANCE OF RESULTS: Oncologists described the RCT as holistic and complementary, and as a significant factor in adopting concurrent care as a standard of care.

A pilot study of activity engagement in the first six months after stem cell transplantation.

UNLABELLED: PRPOSE/OBJECTIVES: to describe the natural pace and pattern of activity resumption in the first six months after stem cell transplantation (SCT). DESIGN: longitudinal, descriptive survey. SETTING: bone marrow transplantation program of a National Cancer Institute-designated comprehensive cancer center in the northeastern United States. SAMPLE: 18 men and 18 women who underwent either autologous (83%) or allogeneic (17%) transplantation. METHODS: participants were surveyed 30 days, 100 days, and six months after SCT. Descriptive statistics were followed by exploratory linear mixed modeling with factors of time, gender, and the interaction between time and gender. MAIN RESEARCH VARIABLES: a modified checklist version of the Activity Card Sort was used to measure activity retention. FINDINGS: participants generally were performing 49% of their usual activities 30 days after transplantation, 70% of their premorbid activities 100 days after transplantation, and 77% of their premorbid activities six months after transplantation. Level of activity engagement increased over time, with the greatest changes observed from 30-100 days after SCT. Men retained more of their activities than women in the domains of low physical-demand leisure and social activities. CONCLUSIONS: rehabilitation screening may be most helpful in the period from 100 days to six months, when activity levels begin to plateau. Activity recovery may differ for men and women; future research should explore how this could affect rehabilitation needs. IMPLICATIONS FOR NURSING: nurses can use structured surveys to explore and promote patients' satisfaction with and ability to engage in daily activities and ensure appropriate referrals to rehabilitation during recovery from SCT.

Effects of a palliative care intervention on clinical outcomes in patients with advanced cancer: the Project ENABLE II randomized controlled trial.

CONTEXT: There are few randomized controlled trials on the effectiveness of palliative care interventions to improve the care of patients with advanced cancer. OBJECTIVE: To determine the effect of a nursing-led intervention on quality of life, symptom intensity, mood, and resource use in patients with advanced cancer. DESIGN, SETTING, AND PARTICIPANTS: Randomized controlled trial conducted from November 2003 through May 2008 of 322 patients with advanced cancer in a rural, National Cancer Institute-designated comprehensive cancer center in New Hampshire and affiliated outreach clinics and a VA medical center in Vermont. INTERVENTIONS: A multicomponent, psychoeducational intervention (Project ENABLE [Educate, Nurture, Advise, Before Life Ends]) conducted by advanced practice nurses consisting of 4 weekly educational sessions and monthly follow-up sessions until death or study completion (n = 161) vs usual care (n = 161). MAIN OUTCOME MEASURES: Quality of life was measured by the Functional Assessment of Chronic Illness Therapy for Palliative Care (score range, 0-184). Symptom intensity was measured by the Edmonton Symptom Assessment Scale (score range, 0-900). Mood was measured by the Center for Epidemiological Studies Depression Scale (range, 0-60). These measures were assessed at baseline, 1 month, and every 3 months until death or study completion. Intensity of service was measured as the number of days in the hospital and in the intensive care unit (ICU) and the number of emergency department visits recorded in the electronic medical record. RESULTS: A total of 322 participants with cancer of the gastrointestinal tract (41%; 67 in the usual care group vs 66 in the intervention group), lung (36%; 58 vs 59), genitourinary tract (12%; 20 vs 19), and breast (10%; 16 vs 17) were randomized. The estimated treatment effects (intervention minus usual care) for all participants were a mean (SE) of 4.6 (2) for quality of life (P = .02), -27.8 (15) for symptom intensity (P = .06), and -1.8 (0.81) for depressed mood (P = .02). The estimated treatment effects in participants who died during the study were a mean (SE) of 8.6 (3.6) for quality of life (P = .02), -24.2 (20.5) for symptom intensity (P = .24), and -2.7 (1.2) for depressed mood (P = .03). Intensity of service did not differ between the 2 groups. CONCLUSION: Compared with participants receiving usual oncology care, those receiving a nurse-led, palliative care-focused intervention addressing physical, psychosocial, and care coordination provided concurrently with oncology care had higher scores for quality of life and mood, but did not have improvements in symptom intensity scores or reduced days in the hospital or ICU or emergency department visits. TRIAL REGISTRATION: clinicaltrials.gov Identifier: NCT00253383.

The project ENABLE II randomized controlled trial to improve palliative care for rural patients with advanced cancer: baseline findings, methodological challenges, and solutions.

OBJECTIVE: There is a paucity of randomized controlled trials (RCTs) to evaluate models of palliative care. Although interventions vary, all have faced a variety of methodological challenges including adequate recruitment, missing data, and contamination of the control group. We describe the ENABLE II intervention, methods, and sample baseline characteristics to increase intervention and methodological transparency, and to describe our solutions to selected methodological issues. METHODS: Half of the participants recruited from our rural U.S. comprehensive cancer center and affiliated clinics were randomly assigned to a phone-based, nurse-led educational, care coordination palliative care intervention model. Intervention services were provided to half of the participants weekly for the first month and then monthly until death, including bereavement follow-up call to the caregiver. The other half of the participants were assigned to care as usual. Symptoms, quality of life, mood, and functional status were assessed every 3 months until death. RESULTS: Baseline data of 279 participants were similar to normative samples. Solutions to methodological challenges of recruitment, missing data, and "usual care" control group contamination are described. SIGNIFICANCE OF RESULTS: It is feasible to overcome many of the methodological challenges to conducting a rigorous palliative care RCT.