Observations from the NCI Subject Matter Expert Roundtable “Evidence-Based Approaches for Optimizing Employment Outcomes among Cancer Survivors.”

I was honored to be an invited participant at a National Cancer Institute (NCI) Roundtable on August 11th and 12th titled, “Evidence-Based Approaches for Optimizing Employment Outcomes among Cancer Survivors.”
 
The NCI invited 25 oncologists, scholars from various disciplines (rehabilitation, epidemiology, economics etc.) from Harvard, Boston University and Case Western Reserve University and representatives from organizations such as the American Cancer Society, the National Business Group on Health, the U.S. Department of Labor, and the National Center for Medical Rehabilitation Research. There were two occupational therapists invited to attend, myself and Robin Newman, Clinical Assistant Professor of OT at Boston University: Sargent College of Health and Rehabilitation Sciences.
 
This transdisciplinary group was convened to assist the NCI staff to outline a research agenda for improving work outcomes among cancer patients and survivors. We were provided a few meta-analyses on cancer and work prior to attending as well as key statistics and figures on employment in persons with cancer. Over the two days we spent time in small and large group discussion focused on the following questions:
 

1. What observational research is needed to address a broad range of work limitations among cancer patients and survivors?
2. What types of interventions are needed to prevent and/or mitigate work limitations among cancer patients and survivors?
3. What needs to get done and how do we get there?
4. Priority setting to help guide the NCI in their efforts.

 
The discussions were spirited, productive, honest and incredibly respectful and collegial even when we disagreed. I could not have been more pleased with the progress made and how committed every participant was to hearing from others, learning and bringing our disparate knowledge together.
 
The NCI will produce a formal summary and when it is available I will post a link or information about accessing the report. In the meantime here are some key facts and my key takeaways from the meeting (I sought permission to share my observations before posting):
 

• In 2016 it is estimated that over 1.6 million people will be diagnosed with cancer. Of these, 46% will be between the ages of 20 and 64, a conservative definition of the working population of cancer survivors.
• A wide range of cancer related conditions affect individuals’ ability to work such as fatigue, pain, sleep disturbances, functional limitations, anxiety, depression, cognitive changes, hair loss, sexual dysfunction, anemia, appetite loss, constipation, diarrhea, incontinence, bleeding, bruising, nausea, vomiting, lymphedema, infections, heart problems, endocrine system problems, osteoporosis, peripheral neuropathy, hearing loss, second cancers.
• While cancer is not as devastating to employment as some illnesses cancer survivors are 1.4 times more likely to be unemployed than individuals without a cancer history.
• Compared to individuals without a cancer history, cancer survivors:
  • Are less likely to work and less likely to work full-time;
  • Are more likely to report that they are limited in the kind or amount of paid work that they can do;
  • Work fewer hours per week than non-cancer controls.
• Research on return-to-work with persons with cancer is similar to return-to-work with other conditions and calls for a multi-factorial, comprehensive program addressing person factors, social factors, environmental factors (home and workplace) as well as policy.
• Factors that have been show to affect RTW are similar to all other conditions (education, job satisfaction, disease severity, relationships in the workplace, type of work etc.)
• Data on employment is not routinely collected as part of clinical trials so there is much we do not know related specifically to cancer.
• It is critical that patients with cancer become informed about legal and policy protections such as Family and Medical Leave and the ADA (and others).
• We need to decide on standardized metrics to use to collect employment related information from patients.
• Disparities in cancer treatment and survival exist and we must consider and address disparities when intervening in the area of employment.
• There is A LOT of measurement work to be done.
• We must not reinvent the wheel and repeat every study that has been conducted with back injury, repetitive use, HIV/AIDS, mental illness etc. with cancer patients just to prove all that research DOES apply to cancer.

• What interventions are needed to address work limitations caused by treatment for persons that differ in functional limitations, job demands and workplace?
  • Financial concerns/burdens (financial toxicity)
  • Frame work as a symptom of treatment
  • Prevocational training IPS models applied to cancer
  • Don’t reinvent the wheel on back to work programs/research
  • Bio-psycho-social models a must
  • Think about Prehabilitation parallels for work
  • Parallel of gap of what we know about chemo brain v. % of patients who are told, to what we know about functional impairment/work and when we consider it.
  • For employers stratify interventions by size, interventions for small private v. large corporate

•  We must not only consider patients with cancer but caregivers and families as well, their work is impacted as well as the patient.

• We must consider carefully to what extent we must evaluate and validate the effectiveness of symptom interventions?
  • Fatigue
  • Chemo-brain
  • Lymphedema

• There is a WIDE range of stakeholders to involve including but not limited to:

• Navigators
• Large companies and creative, progressive employers Hospital
• Professional associations and their accrediting bodies
• Disability vendors and insurers
• SHRM
• Lawyers/EEOC
• Job Accommodation Network
• DMEC
• US Business Leadership Network
• HRD/OD researchers, organizational change leaders
• Orgs like NQF, AHIP

What is the most important direction that research needs to go and what is the most actionable way to get there?
 

• Identify (measure and articulate scope) ST/LT implications of cancer on employment by assessing existing models (interventions in other dx) in and outside cancer with focus on patient/provider relationship
• Gap analysis (problem statement) on scope of problem and matching multifactorial/tailored and reproducible interventions that identify ROI/VOI
• Employment as measured outcome-need measurement too developed ideally limited items for use in clinical trials involving appropriate stakeholders (docs, rehab, pscyhometricians
• Identification/development of standardized measures to identify risk factors for adverse employment outcomes to target interventions
• Patient level screen to refer to resources, using what works (ID interventions) and assess outcomes using standardized measures

 
There is just SO much opportunity for occupational therapy scientists to answer critical questions to decrease health disparities and improve the lives of cancer survivors it makes my head spin!
 
Watch for more updates on the NCI initiative!