LOOK IT UP: Clinical Guidelines for the Rest of Us (Part 2)
On the Multitude of Things That Guide Us
Rick Rader, MD, FAAIDD, FAADM
As we learned in the first part of this article, clinical guidelines are “recommendations on how to diagnose and treat a medical condition.” For the majority of medical specialties, there are an abundant number of these that exist to ensure that all patients, regardless of their residential geography, can receive the same level of treatment and care. Thus, clinicians in Boston and those in Bandera, Texas have access to guidelines created, promoted and recommended by the appropriate specialty groups.
And then there’s “us.”
“Us” are the clinicians dedicated to providing healthcare to people with intellectual and developmental disabilities (IDD).
The “specialty” of developmental medicine (which is still being developed, argued, defined, and is still assembling, organizing and evolving) is embryonic. The American Academy of Developmental Medicine (AADM) is an outgrowth of the American Academy of Developmental Medicine and Dentistry (AADMD). To date there are less than a dozen clinicians who have been board certified by the AADM. Needless to say, there have not been any clinical guidelines developed that specifically relate to conditions that are unique or specific to this patient group.
Of course, one can argue that any typical or atypical medical condition experienced by a person with IDD is “unique.” It is unique in the way it is announced, presented, expressed and assessed. We know that diseases, disorders and ailments can come in multiple flavors. Those that are typical and have a typical presentation (the textbook case); those that are typical but have an atypical presentation; those that are atypical but have a typical presentation; and those that are atypical and have an atypical presentation. The atypical presentations of both typical and atypical disorders are where the rubber meets the road. Very often, people with IDD fall into the atypical presenters’ category. They are atypical because they may not be accurate historians, they may not be able to describe their experiences, they may confuse and offer non-contributory conditions and they may not be accompanied by knowledgeable medical escorts (either family members or paid support staff).
So there are no existing, specific, or dedicated clinical guidelines for treating asthma in patients with Fragile X, although there are guidelines for treating asthma in the general population. There are no specific guidelines for treating migraines in patients with Sensory Processing Disorders, although there are guidelines for treating migraines in the general population. And there are no specific guidelines for treating vertigo in individuals with Down syndrome, although there are guidelines for treating vertigo in the neuro-typical population. So, indeed, we are once again left to the sidelines.
And even if there was a body of clinical guidelines specific to patients with IDD, how useful would they be?
Kim Hing, Public Speaker, Special Olympian and Self-Advocate for People with IDD. Kim represents the patient population served by developmental medicine. Photo Credit: Rick Guidotti for Positive Exposure
One of the criticisms of clinical guidelines is that they dictate treatment. Many clinicians dislike the cookbook nature that many of them have been relegated to. But many professional chefs also dislike the regimentation of cookbooks. Thomas Keller has provided the key to how they should best be employed. “A cookbook must have recipes, but it shouldn’t be a blueprint. It should be more inspirational; it should be a guide.”
It is acknowledged that not all clinical guideline” are created equal. It is reported that over half of clinical practice guidelines use non-systematic methods to inform recommendations (Lunny, Ramasubbu, Pull et al.)
“It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of the New England Journal of Medicine.”
― Marcia Angell, MD, Past Editor, New England Journal of Medicine
Researchers have identified 40 different appraisal tools to ascertain guideline quality. Most guideline-appraisal tools assess whether the literature search and the evaluation, synthesis and presentation of the evidence in guidelines follow the principles of evidence-based medicine. Potential deficits of guidelines include low quality of the evidence underlying the recommendations, lack of transparency of methods applied by guideline developers, especially concerning the derivation of recommendations and the determination of their strength, and inadequate management of potential conflicts of interest.
According to a paper by Siering, Eikermann, Hausner et al , “Several groups, such as the Guidelines International Network, the Institute of Medicine, the World Health Organization, the National Institute for Health and Clinical Excellence, the Scottish Intercollegiate Guidelines Network, many medical societies, as well as individual experts in the field have proposed manuals defining standards for guidelines developers in order to increase guideline quality. Overall, these manuals address the following key elements in the development process: establishment of a multidisciplinary guidelines development group, consumer involvement, identification of clinical questions or problems, conduct of systematic searches and appraisal of the evidence retrieved, procedures for drafting recommendations, external consultation, and ongoing reviewing and updating."
So, in essence, there are no guidelines for guidelines; at least none that have been mandated. The guidelines for guidelines are recommendations; exactly what the clinical guidelines offer clinicians in the first place—recommendations.
While we don’t have guidelines, we have guides.
Those guides are the seasoned, battle-scarred clinicians who have provided community-based health care for people with ID/DD since the early wave of deinstitutionalization began at the end of June 1967. The flow of people leaving the institutions got momentum in the 1980s and saw a major and welcomed migration in the early 1990s.
The ID/DD clinical “guides” represented a small group of unaffiliated, unrepresented and un-respected clinicians. The bulk of them did not anticipate their career paths. Like all pioneers, the “guides” (by their own admission) “fell” into positions, slots, jobs or short term “locums.” It was tough going, they themselves were stigmatized (“guess you couldn’t make it with real patients”), received little support from the medical mainstream, had almost no specialists they could refer patients to, and had one arm tied behind their back by state regulations, watchdogs and critics.
And while this article started out to explain the nature, pratfalls and attributes of clinical guidelines, it has evolved into a tribute to my colleagues who, despite having no guidelines, no policies, practices or procedures, somehow managed to increase the longevity of a population that had historically never entered into middle age.
As guides, their leadership, guerilla tactics, tenacity, innovation, diligence and commitment now serve as guidelines for the new generation of clinicians dedicated to enhancing the health of individuals with ID/DD living and thriving in the community.
No musings about clinical guidelines and clinical guides for people with ID/DD can be considered complete without including the role of three additional vital guides. Clinicians should, can, and do get much of their clinical insights from families. They have the history, experience, insights and references to direct examinations, explanations and treatments about their children. Alongside families—and in certain instances they are more current, reliable and detailed—are the legions of Direct Support Professionals ( DSPs). Many of them have long-standing relationships with the person, in a variety of settings and can share, anticipate and predict reactions, behaviors and emotions. And certainly, the ultimate guides that can provide the clinician with guidelines of how care should be shared, explained, chosen and provided and that is the one who knows the patient best: the patient.
For the astute, compassionate and empathetic clinician, the best guide for the care of that patient is sitting across from them; attached to the other end of the stethoscope.