Physical & Occupational Therapy in Pediatrics, 34(4):384–389, 2014  C 2014 by Informa Healthcare USA, Inc. Available online at http://informahealthcare.com/potp DOI: 10.3109/01942638.2014.964020

EVIDENCE TO PRACTICE COMMENTARY

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Home Program Intervention Effectiveness Evidence Iona Novak & Jane Berry Cerebral Palsy Alliance, School of Medicine, University of Notre Dame, NSW, Australia

KEYWORDS. Home program, evidence based practice, effectiveness, cerebral palsy, autism

Intense physical and occupational therapy intervention for children with disabilities has recently become very topical with growing neuroscience knowledge about the promise of promoting neuroplasticity from intense practice. Neuroplasticity is the brain’s adaptive capacity to encode experiences as well as learn new behaviours and skills (Kleim, 2008). Neuroplasticity is induced in response to early, child-active, repetitious, intense practice of real-life skills that the child is motivated to learn (Kleim, 2008). Yet the field has numerous systems level barriers to implementing neuroplasticity research. One barrier is the long-established tradition of providing “blocks of weekly therapy” followed by breaks, which are well below the recommended total “dose” of therapy for inducing neuroplasticity (Gordon, 2011; Novak, 2012; Sakzewski et al., 2013). In this issue of the journal, we learn that decisions about the intensity of therapy are not actually determined by levels of parent participation and the team but rather by service system factors (Aaron et al., 2014). Home programs have been used for some time now by families and therapists to increase the intensity of therapy, either between treatment sessions or during a break from therapy (Novak & Cusick, 2006). Authors conducting meta-analyses about therapy intensity have recently concluded that home programs provide a pragmatic solution to achieving high dose therapy, thus overcoming the existing systemic implementation barriers (Myrhaug et al., 2014; Sakzewski et al., 2013). In this issue of the journal, we learn that therapists view home programs as a useful strategy for increasing the dose of therapy but want further education and skill development in using home programs effectively (Saksewski et al., 2014). So what are home programs and how can we use them well? Home programs are: “therapeutic activities that the child performs with parental assistance in the home Address correspondence to: Iona Novak PhD, Professor Iona Novak, Head of Research, Cerebral Palsy Alliance, School of Medicine, University of Notre Dame, PO Box 6427, NSW 2086, Australia (E-mail: [email protected]). (Received 5 September 2014; accepted 9 September 2014)

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environment with the goal of achieving desired health outcomes.” (Novak et al., 2007, p. 475). Parents of children with cerebral palsy have proposed an insightful and enriched definition of home programs from the family perspective: “Home programs are a form of guidance and advice, which become a way of life for parents and children. Through regular practice of activities at home, parents maximise their child’s potential. Parents use the guidance and support that they gain from home programs to build confidence about how to help their child” (Novak, 2011, p209). It is clear from the parent definition, that home programs can be an intervention for both the parent and the child (Novak, 2011). However, it is important to remain cognicent that home programs are not actually an intervention in their own right, but rather a mode of delivering services. The question of whether or not a home program will work interestingly depends both on “what” is done and “how” it is done. Let’s begin by looking at the “what” of home programs. There is a saying in the information technology field: “garbage in, garbage out”, meaning that computers produce results based upon the quality and logic of the data entered, and if the data entered is illogical then the output will also be illogical. This analogy can also be loosely applied to home programs. If a known ineffective intervention were implemented within a home program we would not expect it to work, conversely if a known effective intervention were implemented in a home program we would expect it to work. The mode of therapy is not as important as repetitious practice of effective interventions. Therefore, what is the evidence for the effectiveness of home programs? A structured literature search was conducted in the MEDLINE, CINAHL PEDro, and OT Seeker databases using an answerable question framed in the PICOs format (Sackett et al., 2000): What is the effectiveness of home programs for children with cerebral palsy or autism? (Population = children with cerebral palsy OR autism OR autistic spectrum disorder; Intervention = home programs OR home programs; Comparison = unspecified as any alternative intervention was considered; Outcome = unspecified as all outcomes were of interest; and study design = randomized controlled trials OR randomized controlled trials). Table 1 summarizes the articles retrieved and the corresponding critical appraisal using the Oxford Scale (OCEBM, 2011) for level of evidence; the PEDro Scale for quality of evidence (Moseley et al., 1999) and the GRADE system for quality and strength of recommendations (Guyatt et al., 2011). Figure 1 is a bubble chart providing evidence-based guidance about what clinicians might consider doing based on the GRADE and Evidence Alert Traffic Light System ratings (Novak & McIntyre, 2010). The method of how to combine these tools to produce quick clinical answers has been described elsewhere (Novak et al., 2013). It is important to note that other relevant articles may exist in the literature, as hand searching of the grey literature and conference abstracts were not conducted since this was a clinical evidence query, not a full systematic review. Studies were excluded if they compared two different therapy interventions but used a home program on top of both interventions, as these studies were considered “oranges plus apples versus pears plus apples.” Studies were also excluded if they sought to compare “modes” of therapy but at unequal doses (i.e., intense hands-on therapy versus low-dose home programs) as these studies were considered “apples versus oranges” for the purpose of understanding the effectiveness of home programs. To meet the definition of home programs, the intervention

386

RCT

2

RCT = Randomized Controlled Trial; CT = Clinical Trial

Rickards 2007

Nonrandomized CT

Autism Ozonoff 1998

3

2

RCT

Novak 2009

Oxford Level of Evidence

2

Design

Cerebral palsy Katz-Leurer RCT 2009

Citation

5/10

5/10

8/10

7/10

PEDro Score

n = 58 with autism or developmental delay, aged 3—5 years

Home programs (TEACCH program with parent observations, parent coaching and feedback) + center based vs center based alone Home program (weekly home visits for parent coaching and problem solving) + center based therapy vs center based therapy alone

Home programs (developed in partnership with parents using goal directed training and parent education/ coaching) vs control

n = 36 with cerebral palsy, all severities and sub-types, aged 4—12 years

n = 22 with autism, aged 2—6 years

Home programs (using task-orientated exercise) vs control

Intervention

n = 20 with cerebral palsy (n = 10) or brain injury (n = 10), aged 7—13 years

Participants

TABLE 1. Search Results for Home Program Intervention Effectiveness

Home programs led to superior gains in: • cognitive performance

Home programs led to superior gains in: • cognition • developmental skills

Home programs led to superior gains in: • motor abilities ie reach and timed up and go • balance Home programs led to superior gains in: • function • motor abilities • faster goal achievement

Outcomes

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Moderate quality – Probably do it

Low quality – Probably do it

High quality – Do it

High quality – Do it

Grade Quality and Recommendation

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FIGURE 1. Coaching interventions traffic lights. Green (Shaded as Black) = Effective and preferentially use; Yellow (Shaded as Grey) = Measure individual outcomes as more research is recommended; Red = (Shaded as White) Ineffective therefore discontinue use.

must have been carried out by a parent/carer in the home environment, therefore studies were excluded if a health professional or educator solely carried out the intervention in the home environment. There is high quality evidence that home program intervention using goal directed training (also known as task orientated exercise, task specific training or functional therapy) is effective for improving motor outcomes in children with cerebral palsy (Katz-Leurer et al, 2009; Novak et al., 2009). There is low-moderate quality evidence that home program intervention using parent coaching, is effective for improving cognitive outcomes in children with autism (Ozonoff et al., 1998; Rickards et al., 2007). In this issue of the journal, we learn that these findings are corroborated by a new Taiwanese pilot study of high-dose relationship-based (DIR)/FloortimeTM carried out by mothers that were trained by occupational therapists. Children with autism receiving the intervention made significant improvements in their emotional functioning, communication, and daily living skills (Liao et al., 2014). Home programs are carried out by the parent in the home environment with the support and coaching of a therapist (Novak & Cusick, 2006). It therefore follows that the perceived usefulness and effectiveness of a home program can be enhanced by “how” it is set up in partnership with the parent. Evidence suggests that if home programs are set up well according to best available evidence and parent preferences, that parents are more likely to use the home program and thus implement

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Novak and Berry

the intervention at a higher “dose” (Novak et al., 2009; Novak, 2011). The best evidence model for providing effective partnership-based home program includes five steps: (1) establishing a collaborative partnership, where the parent is the expert in knowing their child and their home environment; (2) having the child and family (not the therapist) set goals about what they would like to work on in the home environment; (3) establishing the home program by choosing evidence based interventions that match the child and family goals and empowering the parents to devise or exchange the activities to match the child’s preferences and the unique family routine; (4) providing regular support and coaching to the family to identify the child’s improvements and adjust the complexity of the program as needed; and (5) evaluating the outcomes together (Novak et al., 2006). Parents have identified that they are best able to carryout home programs when they receive the following types of supports:

• Coaching and follow-up support from the therapist at regular intervals; • Prognostic information and guidance from the therapist about what to realistically expect; • A coordinated team approach rather than multiple home programs; • Regular feedback from the therapist about the child’s progress from the home program; • A program designed around the child’s goals so that the program is motivating and enjoyable to carryout; • Emotional and physical support from family members; • Provision of equipment needed to do the activities; • Provision of an exercise logbook as a reminder to practice; • Having a program with a small number of exercises that they feel confident and capable to carryout safely and therapeutically (Novak et al., 2006; Novak, 2011; Taylor et al., 2004). In conclusion, home programs are effective if: (a) the program content is designed upon proven effective interventions; (b) the program is devised so as to respect parent implementation preferences; and (c) the parent is supported and coached to implement the program. Declaration of Interest: The authors reports no declaration of interest. The authors alone are responsible for the content and writing of the article. ABOUT THE AUTHORS Iona Novak, PhD, MSc (Hons), BAppSc (OT), Professor, Head of Research, Cerebral Palsy Alliance, School of Medicine, University of Notre Dame, Australia. Jane Berry, BAppSc (OT), MSc (PaedOT), Consultant for Occupational Therapy, Cerebral Palsy Alliance, Australia. REFERENCES Aaron C, Chiarello LA, Palisano RJ, Gracely E, O’Neil M, Kolobe T. (2014). Relationships among family participation, team support, and intensity of early intervention services. Physical & Occupational Therapy in Pediatrics Early Online:1–13.

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Gordon A. (2011). To constrain or not to constrain, and other stories of intensive upper extremity training for children with unilateral cerebral palsy. Developmental Medicine & Child Neurology 53:56–61. Guyatt G, Oxman AD, Akl EA, Kunz R, Vist G, Brozek J, et al. (2011). GRADE guidelines: 1. Introduction—GRADE evidence profiles and summary of findings tables. Journal of Clinical Eepidemiology 64:383–394. Katz-Leurer M, Rotem H, Keren O, Meyer S. (2009). The effects of a home-based ‘task-oriented exercise programme on motor and balance performance in children with spastic cerebral palsy and severe traumatic brain injury. Clinical Rehabilitation, 23(8):714–724. Kliem JA. (2008). Principles of experience-dependent neural plasticity: implications for rehabilitation after brain damage. Journal of Speech, Language, and Hearing Research 51:S225–S239. Liao ST, Hwang YS, Chen YJ, Lee P, Chen SJ, Lin LY. (2014). Home-based DIR/floortimeTM intervention program for preschool children with autism spectrum disorders: preliminary findings. Physical & Occupational Therapy in Pediatrics Early Online:1–12. Moseley AM, Maher C, Herbert RD, Sherrington C. (1999). Reliability of a scale for measuring the methodological quality of clinical trials. Cochrane Colloquium. Rome, Italy; 1999:39. Myrhaug, TH., Østensjø S, Larun L, Odgaard-Jensen J, Jahnsen R. (2014). Intensive training of motor function and functional skills among young children with cerebral palsy: A systematic review and meta-analysis. BMC Pediatrics (In Press). Novak I. (2011). Parent experience of implementing home programs. Physical and Occupational Therapy in Pediatrics 31:198–213. Novak I. (2012). Evidence to practice commentary: is more therapy better? Physical & Occupational Therapy In Pediatrics 32:383–387. Novak I, Cusick A. (2006). Home programmes in paediatric occupational therapy for children with cerebral palsy: where to start? Australian Occupational Therapy Journal, 53(4):251–26. Novak I, Cusick A, Lannin N. (2009). Occupational therapy home programs for cerebral palsy: Double-blind, randomized, controlled trial. Pediatrics 124:e606–e614. Novak I, Cusick A, & Lowe K. (2007). A pilot study on the impact of occupational therapy home programming for young children with cerebral palsy. American Journal of Occupational Therapy 61(4):463–468. Novak I. McIntyre S. (2010). Education with workplace supports improves practitioners evidence based practice knowledge and implementation behaviours. Australian Occupational Therapy Journal 57:386–393. Novak I, McIntyre S, Morgan C, Campbell L, Dark L, Morton N, et al. (2013). State of the evidence: Systematic review of interventions for children with cerebral palsy. Developmental Medicine and Child Neurology 55(10):885–910. OCEBM Levels of Evidence Working Group. The Oxford 2011 Levels of Evidence. Oxford Centre for Evidence-Based Medicine; 2011. Ozonoff S, Cathcart K. (1998). Effectiveness of a home program intervention for young children with autism. Journal of Autism and Developmental Ddisorders 28(1):25–32. Rickards AL, Walstab JE, Wright-Rossi RA, Simpson J, Reddihough DS. (2007). A randomized, controlled trial of a home-based intervention program for children with autism and developmental delay. Journal of Developmental & Behavioral Pediatrics 28(4):308–316. Sackett DL, Straus SE, Richardson WS, Rosenberg W, Haynes RB. (2000). Evidence-Based Medicine: How to Practice and Teach EBM. Edinburgh: Harcourt Publishers Limited. Sakzewski L, Ziviani J, Boyd RN. (2013). Efficacy of upper limb therapies for unilateral cerebral palsy: a meta-analysis. Pediatrics peds-2013. Sakzewski L, Ziviani J, Boyd RN. (2014). Delivering evidence-based upper limb rehabilitation for children with cerebral palsy: Barriers and enablers identified by three pediatric teams. Physical & Occupational Therapy in Pediatrics. Taylor NF, Dodd KJ, McBurney H, Graham, HK. (2004). Factors influencing adherence to a home-based strength-training programme for young people with cerebral palsy. Physiotherapy 90:57–63.

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