Clinical Care Doesn't End Post-treatment

ABSTRACT: From the Volunteer Files of the Medical Care and Childhood Cancer Ombudsman Programs (MCOP/CCOP)

This case study illustrates some of the off-treatment issues your patients may face and provides some practical solutions to help patients overcome them whether you see them for regular follow-up or just receive an occasional phone call requesting assistance.

Catherine is a 44-year-old survivor of acute lymphocytic leukemia (ALL) who was initially treated in her mid-20s. As a result of her treatment, she was saddled with chronic fatigue. Despite her condition, she managed to work as an accountant for a local bank up to 20 hours a week with a few naps here and there.

On a personal note, Catherine is the youngest of seven children and still lives with her parents who have been and continue to be overly protective of her. While undergoing treatment, her parents repeatedly encouraged her to visit an alternative practitioner for "special injections" to stimulate her immune system, unbeknownst to her treating oncologist.

As a result of these visits, Catherine developed a severe injection site infection. After a heart-to-heart talk with her oncologist, Catherine opted out of these supplemental treatments, instead taking her oncologist's recommendation and focusing all her energy on completing the standard treatment regimen.

Post-treatment Catherine did not have access to a follow-up clinic. Luckily she found an internal medicine physician with some background in cancer survivorship issues to serve as her primary care physician (PCP). After getting to know Catherine, her PCP began to wonder if some nontreatment factors were contributing to her chronic fatigue condition. Her PCP tried, without success, to get her into counseling. Her parents were able to dissuade her from counseling, claiming that she "wasn't crazy" and did not need any counseling.

Her PCP had adroitly noticed that when Catherine's parents were away visiting other siblings or on vacation, her energy level seemed much higher. Co-workers who spent time with Catherine away from the office noticed the same thing. Her PCP felt she probably was suffering under the strain of her overly involved parents and, as a result, might be experiencing borderline depression that contributed to her chronic fatigue.

Despite her long-term remission, Catherine's parents had never given up on trying to get her to buy into "alternative medicine," first for her cancer and now for her fatigue. During one particular low point, Catherine relented to the pressure and agreed to go to an alternative practitioner for more "immune boosting" treatments, and to a local nutritional therapist for an evaluation. The nutritional therapist, unaware of the immune system treatments, suspected that Lyme disease was the root of her fatigue and referred her to an infectious disease specialist to rule out that possibility. The infectious disease specialist confirmed the Lyme disease. The specialist diagnosed musculoskeletal syndrome causing joint, back, and neck pain; sleep apnea; and an inner ear imbalance, all considered sequelae of Lyme disease.

When Catherine submitted the visits to the infectious disease specialist for reimbursement, her insurer declined coverage claiming she failed to demonstrate that she had Lyme disease or any other syndrome that would require the treatment she subsequently received from the alternative practitioner.

Appeal Strategy

Catherine's parents jumped into the fray and contacted CCOP, as they had done to help sort out some issues on coverage of protocol treatment some 20 years before. CCOP put together a panel including a leukemia late-effects specialist, an infectious disease specialist with experience in Lyme disease, and an internal medicine physician with expertise in cancer survivor follow-up. Records were requested from Catherine's PCP, nutritional therapist, infectious disease specialist, and alternative practitioner. The only practitioner who declined to provide any information on Catherine's work-ups and treatment was the alternative practitioner. However, Catherine was a "well-educated graduate" of cancer treatment and always requested copies of all her medical records to keep in her own file, just in case.

Catherine's records showed that she had been given intravenous immunoglobulin (IVIG) by the alternative practitioner and was not tested for Lyme disease until she had completed three IVIG courses. According to the CCOP's panel, repeated administration of IVIG is known to provide false-positive serology results on Lyme disease. Further, there was no laboratory documentation of the original Lyme disease diagnosis in her records.

Her records also indicated that she received intramuscular and oral antibiotics for over 8 months from the alternative therapist (who was an MD) for a "metabolic syndrome" that included Lyme disease, as well as intravenous infusions of antioxidants and substances to support her immune system, including magnesium, vitamins, and minerals.

Records also indicated that this alternative therapist had never performed/ordered any lab tests to establish any deficiencies that required such remediation. The literature provided by the alternative therapist to Catherine to support the treatments was closely examined, and no credible support for any of the treatments received was found. Just to be safe and at CCOP's request, Catherine's PCP ran the generally accepted tests to determine if, in fact, she had any immune system and/or nutritional deficiencies.

CCOP's review panel concluded that there was nothing in the records supporting coverage of the treatment for the Lyme disease. Fortunately, the treatments were not all that expensive, and the parents agreed to cover these expenses. On the bright side, Catherine's nutritional therapist proved in the long run to be an excellent resource for Catherine. The diet she recommended helped Catherine lose about 25 pounds, and she helped her with an exercise regimen. Catherine still experiences some fatigue, but it is far less debilitating than before, and she has increased her hours at the bank.

Lessons Learned

Educate your patients about survivor resources in the area. In Catherine's case, a survivor support group would have eased her transition and might have helped her educate herself to avoid some of the pitfalls she experienced.

It is always comforting for survivors to know there are others who may be experiencing a similar situation or who can just be there for moral support.

Always inquire about vitamin and nutritional supplement use, not only to identify products that could interfere with prescribed treatments, but also to get the profile of any self-treatments the patient is involved in or contemplating.

Recommend an internal medicine physician to provide follow-up for patients in their community and ask the internist to keep in touch with you.

Nutritionists can be a wonderful resource to patients, as a friendly ear, a check on diet and nutrition, and/or a connection into the community.

Finally, it is normal for parents to be protective, but if you sense that their "protectionism" is stifling their child, causing depression, or preventing independent development, it may be time for a talk or a counseling referral.