CAMs & Speech Therapy

In this final post on the potential conflict between Evidence Based Practice (EBP) and Patient Centred Care (PCC) I consider those situations in which your client or the client’s family persists in a course of action that you may feel is not evidence based. This is a very common occurrence although you may not be aware of it. Increasing numbers of surveys reveal that the families of children with disabilities use Complementary and Alternative Medicines/Therapies (CAMs), usually without telling their doctor and other health care providers within the “standard” health care environment.

Despite a growing number of studies it is difficult to get an exact estimate of the prevalence of CAM use among such families (see reading list below). Some estimates are low because families are reluctant to admit to using CAMs. Other estimates are ridiculously high because CAM users are responding to insurance company surveys in order to promote funding for these services and products. However, the best estimates are perhaps as follows: about 12% of children in the general population are exposed to CAMs [but see update below]; the proportion probably doubles for children with developmental disabilities in general and doubles again for children with autism. The most commonly used CAMs are dietary supplements or special diets, followed by “mind and body practices” (sensory integration therapy, yoga, etc.); the use of dangerous practices such as chelation therapy is mercifully much less frequent. Predictors of CAM use are high levels of parental education and stress. The child’s symptoms are not reliably associated with CAM use. The hypothesized reasons for these correlations are that educated parents have the means to find out about the CAMs and the financial means to access them. Having had some personal experience with this, I think that educated parents are very used to feeling in control of their lives and nothing shatters that sense of control as much as finding that your child has a developmental disability. I find it very interesting that the studies shown below counted CAM use after specifically excluding prayer! I may be wrong but I expect that many well educated parents, even those that pray, would look for a more active solution than putting their family exclusively in the hands of God. Educating yourself through internet searches and buying a miracle cure feels like taking back control of your life (although months later when you realize you have thousands of dollars of worthless orange gunk in your basement, you are feeling out of control again AND stupid, but that is another story). Anyway, this is why I think (an untested hypothesis I admit) that patient centred care is actually the key to preventing parents from buying into harmful or useless therapies.

When the parent asks (or demands, as used to happen when I had my private practice) that you use a therapy that is not evidence based, how do you respond in a way that balances evidence based practice with patient centred care?

The most important strategy is to maintain an open and respectful dialogue with the family at all times so that conversation about the use of CAMs can occur. Parents often do not reveal the use of these alternative therapies and sometimes there are dangerous interactions among the many therapies that the child is receiving. It is critical that the parent feels comfortable sharing with you and this will not occur if you are critical or dismissive of the parents’ goals and choices. A PCC approach to your own goal setting and intervention choices will facilitate that dialogue. It is actually a good thing if the parent asks you to participate in a change in treatment approach.

Find out what the parent’s motivations are. Possibly the parent’s concerns are not in your domain. For example dad might ask you to begin sessions with relaxation and breathing activities. You launch into a long lecture about how these exercises will not improve speech accuracy. It turns out that the exercises are meant to calm anxiety, a new issue that has arisen after a change in medication and some stresses at school. As an SLP, you are not actually in a position to be sure about the efficacy of the activity without some further checking and going along with the parent is not going to hurt in any case.

Consider whether your own intervention plan is still working and whether your own goals are still the most pertinent for the child. Sometimes we get so wrapped up in the implementation of a particular plan we miss the fact that new challenges in the child’s life obligate a course correction. Mum feels like her child needs something else and looks around for an alternative. After some discussion you may find that switching your goal from morphosyntax to narrative skills might work just as well as introducing acupuncture!

Talk with the parent about where the idea to use the CAM came from and how the rest of the family is adapting to the change. It is possible that mum knows the diet is unlikely to work but dad and dad’s entire family has taken it on as a family project to help the child. In some ways the diet is secondary to the family’s sense of solidarity. On the other hand mum may be isolating herself and the child from the rest of the family by committing to an intervention that everyone else thinks is bonkers! This will be difficult but efforts to engage the family with counseling might be in order.

Explore ways to help the parent establish the efficacy of the CAM. With the family’s consent you might be able to find information about the alternative approach from sources that are more credible than google. You might be able to help the parent set up a monitoring program to document changes in behavior or sleep habits or whatever it is that the parent is trying to modify. You may even be able to implement a single subject randomized experiment to document the efficacy of the therapy for the child. Dad may enjoy helping to plot the data in a spreadsheet.

Finally and also crucially, model evidence based thinking in all your interactions with the family. When you are suggesting new goals or approaches to intervention explain your decisions. Involve the family in those choices, describing the potential benefits and costs of the various options by referencing the scientific literature. Let the parent know that you are making evidence based hypotheses all the time and watching their child carefully to confirm whether your hypotheses were correct. Involve families in this process so that they become used to thinking in terms of educated guesses rather than phony certainties.

UPDATE on December 11, 2017: I am updating this post to include new data from a Canadian survey of families attending the Children’s Hospital of Eastern Ontario, a sample of 397 participants, 95% reporting their child to be in good overall health. The survey found that 61% of children were exposed to complementary or alternative medicines/healthcare practices and the parents had a high degree of confidence in their effectiveness. The finding of higher education in parents who used CAMS was replicated in this study. Kalaichandran et al. (2017). Use and perceived effectiveness of complementary health approaches in children. Pediatrics & Child Health.

Reading list

Bowen, C. & Snow, P. C. (forthcoming, about January 2017). Making Sense of Interventions for Children’s Developmental Difficulties. Guildford: J&R Press. ISBN 978-1-907826-32-0 

Levy, S. E., & Hyman, S. L. (2015). Complementary and Alternative Medicine Treatments for Children with Autism Spectrum Disorders. Child and Adolescent Psychiatric Clinics of North America, 24(1), 117-143.

Owen-Smith, A. A., Bent, S., Lynch, F. L., Coleman, K. J., Yau, V. M., Pearson, K. A., . . . Croen, L. A. (2015). Prevalence and predictors of complementary and alternative medicine use in a large insured sample of children with Autism Spectrum Disorders. Research in Autism Spectrum Disorders, 17, 40-51.

Salomone, E., Charman, T., McConachie, H., Warreyn, P., Working Group 4, & COST Action “Enhancing the Scientific Study of Early Autism”. (2015). Prevalence and correlates of use of complementary and alternative medicine in children with autism spectrum disorder in Europe. European Journal of Pediatrics, 174, 1277-1285.

Valicenti-McDermott, M., Burrows, B., Bernstein, L., Hottinger, K., Lawson, K., Seijo, R., . . . Shinnar, S. (2014). Use of Complementary and Alternative Medicine in Children With Autism and Other Developmental Disabilities: Associations With Ethnicity, Child Comorbid Symptoms, and Parental Stress. Journal of Child Neurology, 29(3), 360-367.

 

 

Do our patients prove that speech therapy works?

The third post in my series on Evidence Based Practice versus Patient Centred Care addresses the notion that the best source of evidence for patient centred care comes from the patient. I recall that when I was a speech-language pathology student in the 1970s, my professors were fond of telling us that we needed to treat each patient as a “natural experiment”. I was reminded of this recently when a controversy blew up in Canada about a study on Quebec’s universal daycare subsidy and the author of the study described the introduction of the subsidy as a “natural experiment” and then this same economist went on to show himself completely confused about the nature of experiments! So, if you will forgive me, I am going to take a little detour through this study about daycare before coming back to the topic of speech therapy with the goal of demonstrating why your own clients are not always the best source of evidence about whether your interventions are working or not, as counter-intuitive as this may seem.

Quebec introduced a universal daycare program in 1997 and a group of economists have published a few evaluations using data from the National Longitudinal Study of Children and Youth (NLSCY), one looking at anxiety in younger kids  and the more recent one describing crime rates when the kids were older . The studies are rather bizarre in that children who access daycare (or not) do not provide data for these studies – rather province wide estimates of variables such as likelihood of using daycare and childhood anxiety are obtained from the NLSCY which is a survey of 2000 children from across Canada, obtained biannually but followed longitudinally; then they estimated province wide youth criminal activity from a completely different survey rather than using the self-report measures from the NLSCY. Differences in these estimates (see post-script) from pre-daycare cohorts to post-daycare cohorts are compared for Quebec versus the ROC (rest of Canada, which does not have any form of universal childcare program). One author described the outcome this way: “looking at kids in their teens, we find indicators of health and life satisfaction got worse, along with teens being in more trouble with the law.” The statistical analysis and design are so convoluted I was actually hoodwinked into thinking youth crime was going up in Quebec, when in fact youth crime was actually declining, just not as fast as in the ROC. In actual fact, youth crime legislation and practices vary so dramatically across provinces, and particularly between Quebec and the ROC that it is difficult indeed to compare rates of youth crime using the variable cited in the NBER paper (rates of accused or convicted youths; for discussion see Sprott). Then they attribute this so-called rise but actual decline in crime to “the effects of a sizeable negative shock to non-cognitive skills due to the introduction of universal child care in Quebec”. Notwithstanding this nonsense summary of the results of these really weird studies, the most inaccurate thing that Milligan said is that this study was a “natural experiment” which is “akin to a full randomized experiment such as Perry Preschool, but on a larger scale”. But the thing is, a “natural experiment” is not an experiment at all because when the experiment is natural, you cannot determine the cause of the events that you are observing (although when you have enough high quality pairs of data points you can sometimes make decent inferences, NOT the case in this particular study). The economists know how to observe and describe naturally occurring events. They can estimate an increase in daycare use and changing rates of child anxiety and youth crime convictions in Quebec vs the ROC and compare changing rates of things between these jurisdictions. What they cannot do is determine why daycare use changed or reported anxiety changed or convictions for youth crime changed. To answer the question “why”, you need an experiment. What’s more, experiments can only answer part of the “why” question.

So let’s return to the topic of speech therapy. We conduct small scale randomized control trials in my lab precisely because we want to answer the “why” question. We describe changes in children’s behavior over time but we also want to know whether one or more of our interventions were responsible for any part of that change. In our most recently published RCT we found that even children who did not receive treatment for phonological awareness improved in this skill, but children who received two of our experimental interventions improved significantly more. Control group children did not change at all for articulation accuracy whereas experimental group children did improve significantly. In scatterpots posted on my blog, we also showed that there are individual differences among children in the amount of change that occurs within the control group that did not experience the experimental treatments and within the experimental groups.  Therefore, we know that there are multiple influences on child improvement in phonological awareness and articulation accuracy, but our experimental treatments account for the greater improvement in the experimental groups relative to the control group. We can be sure of this because of the random assignment of children to treatments which controls for history and maturation effects and other potential threats to the internal validity of our study. How do we apply this information as speech-language pathologists when we are treating children, one at a time.

When a parent brings a child for speech therapy it is like a “natural experiment”. The parent and maybe the child are concerned about the child’s speech intelligibility and social functioning. The parent and the child are motivated to change. Coming to speech therapy is only one of the changes that they make and given long waits for the service it is probably the last in a series of changes that the family makes to help the child. Mum might change her work schedule, move the child to a new daycare, enlist the help of the grandparent, enroll the child in drama classes, read articles on the internet, join a support group, begin asking her child to repeat incorrect words, check out alliteration books from the library and so on. Most importantly, the child gets older. Then he starts speech therapy and you put your shiny new kit for nonspeech oral motor exercises to use. Noticing that the child’s rate of progress picks up remarkably relative to the six month period preceding the diagnostic assessment, you believe that this new (for you) treatment approach “works”.

What are the chances? It helps to keep in mind that a “natural experiment” is not an experiment at all. You are in the same position as the economists who observed historical change in Quebec and then tried to make causal inferences. One thing they did was return to the randomized control trial literature, ironically citing the Perry Preschool Project which proved that a high quality preschool program reduced criminality in high risk participants. On the other hand, most RCTs find no link between daycare attendance and criminal behavior at all. So their chain of causal inferences seems particularly unwise. In the clinical case you know that the child is changing, maybe even faster than a lot of your other clients. You don’t know which variable is responsible for the change. But you can guess by looking at the literature. Are there randomized controlled trials indicating that your treatment procedures cause greater change relative to a no-treatment or usual care control group? If so, you have reason for optimism. If not, as in the case of nonspeech oral motor exercises, you are being tricked by maturation effects and history effects. If you have been tricked in this way you shouldn’t feel bad because I know some researchers who have mistaken history and maturation effects for a treatment effect. We should all try to avoid this error however if we are to improve outcomes for people with communication difficulties.

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PS If you are interested in the difference-in-difference research method, here is a beautiful youtube video about this design, used to assess handing out bicycles to improve school attendance by girls in India. In this case the design includes three  differences (difference-in-difference-in-difference design) and the implementation is higher quality all round compared to the daycare study that I described. Nonetheless, even here, a randomized control trial would be more convincing.

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.