Full Engagement with Evidence and Patients in SLP Practice

This is the second in my promised series on the topic of Evidence Based Practice versus Patient Centred Care. I will respond to the implication that EBP constrains the choices of the patient and the SLP thus conflicting with PCC and minimizing the role of clinical expertise. I will argue that the evidence is less constraining than generally believed.  The SLP must understand the general principles revealed by the research and understand the patient’s needs well enough to apply the evidence. As Sue Roulstone put it “Clinical expertise supports the skillful application of that research to the practice situation”.

It is necessary to know the research deeply in order to understand the clinical implications beyond the simple “what works” messages that might be found in the paper abstracts. I will provide two examples. Recently Françoise Brosseau Lapré and I published a randomized control trial (RCT) in which we reported that 2 of 4 interventions worked well (one focusing on intense speech practice and the other focusing on listening and responding to speech inputs). Both interventions involved 6 weeks of individualized speech therapy followed by a 6 week parent-education program. We have been talking about this trial in the local community for some time now and unfortunately the take away message seems to have been that parent training works. SLPs are using the trial as a justification for the implementation of parent training initiatives without an accompanying individualized therapy component. And yet, a careful reading of our work reveals that the trial is not, ultimately, about parent training at all. Our research was about alternative means for providing intense focused inputs to children with phonological disorders. In one way the results of the trial increased options for SLPs and families by showing that two approaches can be equally effective as shown in a previous blog post; at the same time the trial should constrain SLP choices somewhat by focusing attention on intensity and coherence in the selection of treatment procedures.

Another example is provided by the parent administered focus stimulation program for treatment of morphosyntax delays described by Marc Fey and Pat Cleave many years ago. They reported that a parent implemented intervention could be as effective as an SLP implemented intervention while being very efficient, requiring about half as much SLP time per child. I remember that shortly thereafter many SLP programs in Canada cut their ration from 16 to 8 weeks/hours per child and strongly promoted parent mediated interventions as the primary mode of care. The thing is that the parent program described in Fey’s trial required 21 hours per child to implement! Furthermore, a follow-up study revealed that parents were not able to implement it as effectively when their children’s goals became more complex.

There are many studies that involve parent implemented interventions and overall what they tell us is that (1) intensity matters – an effective speech and language interventions gets as much “data” to the child as possible; (2) parent involvement in the therapy program is just one way to achieve an increase in intensity; (3) parents can be effective if they are very well trained and supported and the home program is focused on the achievement of specific goals; (4) training and support takes time and effort on the part of the SLP; and (5) not all parents are equipped to implement speech therapy for all goals. There is a lot of nuance here and SLPs should be empowered to apply this research evidence to meet their clients’ needs.

I know that SLPs prefer to make decisions in the best of interests of their patients without being constrained by evidence based care guidelines. But the flipside of understanding the evidence well is understanding your patient’s needs equally well.  When I was a young SLP, I know that I made many mistakes in this regard until I learned some things the hard way. I recall that when my daughter was small and needed a lot of therapies, the various providers fervently believed that it was best if I provide all those practice exercises at home in the natural environment. Furthermore, somebody, without consulting me, decided that a speech-language pathologist was not a necessary member of my daughter’s rehab team because I could fulfil that role myself! I ended up in the nurse coordinator’s office crying, ‘I am her mother, not her therapist’. Mercifully, a whole new plan was put in place. The thing is, that for PCC to work you have to really understand what the evidence says and then you have to understand the needs of your patients.

An excellent qualitative study that shows how breakdowns in PCC lead to poor outcomes is found in Annals of Family Medicine.  The authors identify four archetypes of engagement in shared decision making (SDM): full engagement (SDM present, subjective experience positive); simulated engagement (SDM present, subjective experience negative); assumed engagement (SDM absent, subjective experience positive); and nonengagement (SDM absent, subjective experience negative). I strongly recommend reading the paper and the vignettes made available in the online supplemental material. They make for fascinating reading. Full engagement is characterized by shared decision making and mutual trust. The other situations often involve one or both parties making assumptions about the other person’s feelings or motives, leading to a lack of disclosure of important information.

The research evidence might tell you that an intervention can work. Patient centred care is necessary to make sure that it will work.

Shared Decision Making in SLP Practice

This is the first in my promised series on the topic of Evidence Based Practice versus Patient Centred Care. This blogpost is a response to the concern that patients’ preferences may lead to the selection of treatment options that are not evidence-based. This is increasingly possible given the large amount of consumer health information on the internet. However, this information, while sometimes emanating from credible sources, tends to be supplier- rather than consumer- driven, and information by itself does not help patients make the best decisions about their own care. Furthermore, enabling patients to “choose” options that are not in their own best interests can hardly be described as “patient centred care”.

The current best model for PCC is shared decision making in which there is a two-way exchange of information between the SLP and the patient and/or patient’s family. This decision making model can be contrasted with a paternalistic model in which the health care provider makes the decision with limited input from the patient and the informed patient choice model in which the patient is provided with information and then expected to make their own decision independently.

The SLP provides expert information and decision making support and the patient/family provides information about preferences and expectations. The exchange should clarify expectations about the goal of the intervention, identify evidence based interventions and service delivery options, highlight the benefits and risks of those options, and reveal the patient’s values, supports and decision making needs. A tool that has been developed to help patients make decisions about varying health care options is the Ottawa Personal Decision guide, available in several languages. Note that the patient is expected to review the information with the health care provider so that they can make the decision together.

We can consider this model in the context of an extremely common but controversial treatment decision. Let’s say that you have assessed a 18-month-old boy who has low normal receptive language skills and produces only three words. The child has a severely restricted phonetic repertoire when considering both meaningful and nonmeaningful utterances (one stop, one nasal, one vowel). Mum is especially concerned because her own brother is dyslexic and her sister’s son is currently receiving speech-language services at school. You discuss three potential treatment options with the parent in view of the potential risks and benefits and the mother’s preferences:

  1. Watchful waiting: this is the standard recommendation of the hospital in this case because the evidence suggests that late talkers tend to have a good outcome and 18 months is too earlier to predict language impairment on the basis of late talking. The risk is that the child will not catch up and there is evidence that reading outcomes are better in the case of late talking plus family history of dyslexia when the child achieves good vocabulary scores at an early age. Mum is not favourable to this option because her brother and nephew both struggled at school, academically and socially, and she wishes to prevent that outcome for her son at all cost.
  2. Referral to a parent group that is offered by the local health unit in which the SLP teaches the parents responsive interaction techiques. The benefit is that she may learn some useful strategies for stimulating her child’s language at home and she will have the opportunity to connect with parents of other late-talking children. If her son’s language skills do not start to increase rapidly she will be connected to a community resource that can act quickly. The risk is that she will invest time in an intervention that has not been shown to be more effective than watchful waiting over the long term for this population. Mum is not favourable to this option because her husband is about to have hip surgery and he will need her support over the next three months. She does not feel that she will have the time resources to participate in this program at the present time.
  3. Private therapy, using her work-based insurance plan, with grandma taking the son to therapy sessions (12 sessions are covered under the plan). The benefit is that the private SLP can focus on the child’s speech sound repertoire as well as his expressive vocabulary development. Mum will also know that she is doing all she can to accelerate her son’s language development. Grandma will likely be spending a lot of time with her grandson due to the other stresses currently in the family and she has the time resources to attend and follow-through on the therapy sessions. The risks are associated with the opportunity costs – there is a possibility that the child’s language development may pick up without therapy and the child and family might be better off to engage in other valuable pursuits. Mum discusses this option with the rest of the family and they decide to proceed given the family history of slow language development and dyslexia. They are particularly anxious to prevent the need for therapy during school if at all possible. The SLP agrees that this is a reasonable course of action given the concomitant speech delay (restricted phonetic repertoire) and family history, although she would have been willing to wait six months as well and then reassess. She helps the family to identify an appropriate private service provider. She recommends a hospital reassessment in one year’s time.

The goal is to make decisions jointly with the patient taking into account the patient’s needs, the family’s values and particular circumstances, the benefits and risks of the possible actions as informed by the research evidence, and the constraints of the service providers in the local community. In a future blogpost I will bring in some qualitative research on the nature of these interactions and the features that lead to a successful outcome.

Evidence Based Practice versus Patient Centred Care

@WeSpeechies is again proving to be a source of fascinating conversation. During the week October 25 – 31, (David Kinnane, Consumer protections and speech pathology services: Are we doing the right things at the right times?) an excellent paper by Sue Roulstone was posted, “Evidence, expertise, and patient preference in speech-language pathology” in the context of a discussion about whether evidence based practice (EBP) is inconsistent with patient centred care (PCC). There are a number of loosely connected propositions that might lead to this conclusion and I am going to list them here and then discuss them in separate blogposts. Ultimately I will conclude that patient centred care demands that we practice in an evidence based manner.

The arguments in favour of the idea that EBP and PCC are in conflict come from both directions, either there is a worry that the patient’s preferences will be in conflict with the evidence or there is concern that applying the evidence means ignoring the patient, not to mention clinical expertise.

The first objection is that PCC means selecting treatment approaches and practices in accordance with the patient’s preferences and values. I will argue in my first blog that there are several different models of PCC but none of them are the same as ‘consumer driven decision making”, in other words, simply doing what the patient asks. The preferred model, “shared decision making” is fully consistent with EPB.

A second objection is that EPB implies that there is only one treatment option for every case; therefore there is no room for taking the patient’s preferences and values into account. I will argue that the evidence is nearly always about probabilities and general principles. Therefore it is the role of the SLP to work with the patient to determine which evidence is most applicable and then jointly choose among the best alternative courses of action.

A third perspective is that the most patient centred form of care is to apply a treatment to each individual patient and then watch to see if it “worked” because after all, RCTs only apply to groups of other patients, not your current specific patient. Therefore, clinical expertise should be added to the evidence hierarchies as a form of evidence for treatment efficacy. I will argue that you can never determine treatment efficacy by simply observing change in a single patient.

Finally, the arguments made in all of these blogposts will seem a bit abstract. What do you do when the patient persists in a course of action that appears to be in conflict with all evidence? I will recount my experience with this situation and suggest a course of action. As always I invite your comments.