Advocacy for Pediatric Patients with Inflammatory Bowel Disease

Abstract

Physicians who treat patients with chronic illnesses know that the practice of medicine has come to involve the practice of patient advocacy. Whether it be justifying a prescription for a nonformulary medication or trying to help a child obtain necessary accommodations from a school, physicians who treat children with IBD have to learn to be advocates. Although this is not something we are taught in medical school, it has become an integral facet of practicing collaborative medicine in the United States in the twenty-first century.

Appendices

Appendix 1: Sample Letter for Patient’s Student File Regarding Educational Accommodations Needed for an IBD Diagnosis

To Whom It May Concern:

This letter is being written on behalf of our patient, XXXXX (DOB: XX/XX/XX), who recently was diagnosed with Crohn disease, a chronic inflammatory bowel disease of the intestines. As chronic illness is cyclical in nature, XXX can face gastrointestinal symptoms in a recurrent pattern, with periods of symptom inactivity in between active flare-ups and complications. Cramps may be severe and may be worse when there is a need to use the toilet; symptoms may worsen in an unpredictable manner and conversely, may go into remission for varying lengths of time. During a flare-up, this illness will substantially impair the major life activities like bowel and digestive functions. The medical team is currently working to coordinate the long-term treatment plan as the team explores the impact of these symptoms on her body and her body’s response to the medication regimen.

Even if a patient no longer requires an inpatient hospitalization, we could expect the patient still to experience ongoing symptoms until the medical team is able to arrange her maintenance treatment regimen. XXX has been seen for her first outpatient follow-up appointment since diagnosis, and the medical team continues to monitor her symptoms, which continue to intermittently interfere with her ability to attend school for a full day.

In the long term, however, with the understanding and support of her teachers and other school personnel, we expect XXX to participate in school activities. When the medical team better determines the best course of maintenance treatment for her, we have no reason to expect that it should routinely interfere with her academic plan or performance. In addition, XXX may be tardy or absent from school from time to time if her condition is flaring. The disease process can affect many aspects of a person’s life; depending on the current symptoms, patients can find it difficult to cope as there is an interference with their physical and social functioning.

We feel it would be helpful for XXX’s school re-entry to begin in a partial day format, as her body continues to adjust. In the immediate, short term, we believe it is in XXX’s best interest that she be eligible for home tutorial services so that her academic studies are not compromised by this acute period of her condition. These services would also be recommended to have in place, should flare-ups occur in the future, causing her to intermittently and unpredictably miss schoolwork.

We know that the emotional and physical pieces are interrelated in complex ways, and patients can experience flare-ups during times of emotional tensions and stress. This can relate to changes in the physiological functioning of the gastrointestinal tract. While periods of intense stress and pressure can exacerbate symptoms, it is important to note that they do not cause the disease and are not responsible for the development of the illness.

Please understand the extenuating circumstances facing XXX, should the physical or emotional adjustment to the demands of her chronic illness intermittently impact her ability to carry out her academic responsibilities. Please contact XXX with further questions. Thank you for your time and understanding. We look forward to being able to collaborate with the school in any manner that will optimize her future academic and medical plans.

Appendix 2: Preparing an Effective Insurance Company Letter of Medical Necessity

• Patient’s name (and name of insured if not the patient).

• Patient’s Insurance ID number, Social Security number and date of birth.

• The treatment requested and denied.

• Your specialty and years of experience.

• Your experience with the particular device, medication or treatment.

• The patient’s diagnosis, including both subjective and objective support for the diagnosis (patient’s subjective complaints plus weight loss, recent barium study, endoscopy reports with pathology, etc.).

• What treatments have been tried over what period of time (go back to the date of diagnosis and describe all that has been tried and failed, explain the reason for the failure, i.e., failure to control disease, allergic reaction, adverse event such as pancreatitis).

• If device, medication or other treatment is considered by the insurance company to be experimental, investigational or unproven, summary of the medical literature, preferably including copies of the literature (both summary and copies of literature are enclosed).

• Why you believe this therapy or service is clinically indicated for this patient at this time.

• Describe your plan to assess treatment efficacy (whether your therapy will help this patient). For example, in a patient with CD involving the ascending colon, state you will follow the patient monthly, and monitor exam, hematocrit, C-reactive protein, and perform a colonoscopy after 6 months to assess mucosal healing.

• Summarize your medically necessary request again, and offer to talk to any health care professional from the insurance company if additional information is needed.

Appendix 3: Sample Letter for Appeal of Denial of Mental Health Benefits

To Whom It May Concern:

This letter is being written on behalf of our patient, XXX (DOB:), whom we follow for her diagnosis of Crohn disease, a chronic inflammatory bowel disease of the colon and small intestine. We submit this letter in support of her being permitted to receive out-of-network mental health benefits at/through (agency name/private provider) as a clinical case exception. XXX has had a complicated course of her illness, having been hospitalized several times for unpredictable flares of her disease, both times leading to lengthy admissions followed by intensive outpatient follow-up. Her illness’ response to our treatment plan has been sporadic and inconsistent, causing great stress on both her mind and body. We know that the emotional and physical pieces are interrelated in complex ways, and patients can experience flare-ups during times of emotional tensions and stress. This can relate to changes in the physiological functioning of the gastrointestinal tract; we have seen this occur with XXX. Her medical complications have led to periods of intense stress and pressure, thereby exacerbating symptoms. XXX’s specific circumstances are physically and psychologically complicated, and it is crucial to be able to integrate the medical and psychiatric services; this will be critical to providing the most comprehensive and cost-effective care.

(Agency name/private provider) specializes in diagnosing and treating children and teenagers with comorbid physical and psychiatric/psychological issues. (Agency) provides and coordinates integrated plans of treatment, including psychopharmacology, cognitive behavioral therapies, and family work specifically geared toward helping manage these comorbid populations. Studies have shown that this type of integration of medical and psychiatric services can decrease both medical and psychiatric morbidity, and thus medical costs.

XXX’s ability to access these services could be essential in reducing the risk factors for a necessary medical or psychological hospitalization. A hospitalization would be much more costly, both financially and in terms of the missed developmental learning opportunities in the social and academic realms.

It is in XXX’s best interest to receive ongoing psychological care in a formal clinical model. However, we would request authorization for at least a two-session evaluation so that the formulation and treatment recommendations can be passed on to community psychiatric providers in their network. We feel strongly that the optimal coordinated care plan would include your insurance plan’s willingness to authorize 12–14 treatment sessions so that XXX and her family can have access to the specialized skills of (agency/provider), thereby reducing the chances of an emergent, and perhaps more costly, hospitalization.

Please understand the extenuating circumstances impacting XXX. Thank you very much for your time and consideration in this urgent matter. Feel free to contact XXX with further questions. We look forward to hearing your response.

Appendix 4: Social Security Listing of Impairments for Children with IBD

Section 105.00, Digestive Impairments in Children

• A. Disorders of the digestive system which result in disability usually do so because of interference with nutrition and growth, multiple recurrent inflammatory lesions, or other complications of the disease. Such lesions or complications usually respond to treatment. To constitute a listed impairment, these must be shown to have persisted or be expected to persist despite prescribed therapy for a continuous period of at least 12 months.

• B. Documentation of gastrointestinal impairments should include pertinent operative findings, appropriate medically acceptable imaging studies, endoscopy, and biopsy reports. Where a liver biopsy has been performed in chronic liver disease, documentation should include the report of the biopsy. Medically acceptable imaging includes, but is not limited to, X-ray imaging, computerized axial tomography (CAT scan) or magnetic resonance imaging (MRI), with or without contrast material, myelography, and radionuclear bone scans. “Appropriate” means that the technique used is the proper one to support the evaluation and diagnosis of the impairment.

• C. Growth retardation and malnutrition. When the primary disorder of the digestive tract has been documented, evaluate resultant malnutrition under the criteria described in 105.08. Evaluate resultant growth impairment under the criteria described in 100.03. Intestinal disorders, including surgical diversions and potentially correctable congenital lesions, do not represent a severe impairment if the individual is able to maintain adequate nutrition, growth and development.

• D. Multiple congenital anomalies. See related criteria, and consider as a combination of impairments.

105.07 Chronic inflammatory bowel disease (such as ulcerative colitis, regional enteritis), as documented in 105.00 . With one of the following:

• A. Intestinal manifestations or complications, such as obstruction, abscess, or fistula formation which has lasted or is expected to last 12 months.

• B. Malnutrition as described under the criteria in 105.08.

• C. Growth impairment as described under the criteria in 100.03.

105.08 Malnutrition, due to demonstrable gastrointestinal disease causing either a fall of 15 percentiles of weight which persists or the persistence of weight which is less than the third percentile (on standard growth charts) . And one of the following:

• A. Stool fat excretion per 24 h:

  • 1. More than 15% in infants less than 6 months.

  • 2. More than 10% in infants 6–18 months.

  • 3. More than 6% in children more than 18 months.

• B. Persistent hematocrit of 30% or less despite prescribed therapy.

• C. Serum carotene of 40 μg/100 mL or less.

• D. Serum albumin of 3.0 g/100 mL or less.

Appendix 5: Preparing an Effective Letter for Family Medical Leave Act Provisions

• Caregiver/parent’s name (employee).

• Patient’s name.

• Patient’s diagnosis, date of diagnosis, length of treatment—chronic illness requires lifelong medical attention of some level.

• If relevant, recent or upcoming overnight stay in a hospital including estimation of incapacity after discharge home.

• Explain incapacitation as inability to attend school or perform other regular daily activities during the times of hospitalization, recovery or scheduled outpatient medical procedures.

• All occasions and specifics of ongoing and continued treatment by a health care provider as an outpatient, specifically outlining caregiver’s responsibility for medication administration, monitoring and reporting of bowel habits at home, coordination with other sub-specialty providers, as applicable.

• Phrases indicating episodic, intermittent, unpredictable, cyclical nature of the IBD disease process, with the need for ongoing, periodic outpatient visits.

• Emphasis of importance of the caregiver being present at these visits for active and ongoing discussion with the medical team to be able to participate in progressive treatment plan decisions that impact the child.

• Explanation that child’s intermittent incapacity may cause the caregiver to work intermittently or on less than a full schedule.

• Identification of any potential future treatment or collateral providers in the child’s care, including medication infusion at a day hospital center, routine exploratory procedures, imaging studies.

• Anticipate the potential involvement of radiologists, laboratory technicians, infusion center staff, physical therapists, dieticians, mental health professionals, so that if a caregiver has to accompany a child to an appointment with one of these providers, without your presence, it can still be validated by the employer as qualifying for FMLA hours.

• Specification that child requires basic medical assistance for medical decision making, transportation to appointments, and psychological comfort to assist in the management of the impact of the treatment regimen, given the interruption to daily functioning, and the invasive nature of portions of the treatment plan.