Increasing adherence to therapy through games for cystic fibrosis children - Review

Cystic fibrosis, also known as Mucoviscidosis, is a so-called genetic disease that primarily affects the respiratory and digestive systems of 70 000 to 100 000 people worldwide [CFWW].

Physiotherapy

Modern physiotherapy in CF is a combination of inhalation therapy, airway clearance techniques (ACT), physical exercise and ongoing education about the disease and its treatment. Modern physiotherapy is primarily preventative and has to be incorporated into each patient's daily routine in a lifetime perspective. [2009 ICF 153] This can only be achieved by tailoring an individual treatment that limits the burden to the patient and allows a compliant treatment [2009 ICF 153, 2009 Flume 224] Airway clearance techniques have been a cornerstone to minimize the devastating effects of airway obstruction, infection, and inflammation and to to extend and improve the quality of life. [2013 Volsko 215, 2003 Wagener 249]. It should be performed on a regular basis in all patients, even if the overall evidence of ACT benefits are moderate. [2009 Flume 224] Expiratory resistance breathing is used to evacuate secretions in combination with the forced expiration technique (FET). It can be done with babies. [2009 ICF 153] Forced expiratory manoeuvres are probably the most effective part of chest physiotherapy [1997 Van der Schans].

Airway clearance devices

There are at least three classes of airway clearance devices: positive expiratory pressure devices (PEP), airway oscillating devices (AOD) and high frequency chest compression (HFCC) / mechanical percussion (MP) devices. [2009 Health Ontario 210] PEP devices provide constant back pressure to the airways during expiration [2006 Elkins 158]. PEP is the most commonly used method in Canada for patients with CF [2013 Mc Ilwaine 222]. Airway oscillating devices such as the Flutter [2013 Bouzin 146] enable a modulation of the pressure and airflow oscillation frequency. Thus, the patient induces maximal vibrations of the bronchial walls which promote clearance of the obstructed airways. [2009 ICF 153] There is a lack of empirical evidence to support the superiority of any particular airway-clearance device or technique. [2013 Volsko215, 2011 Fainardi 159, 2009 Marks 225, 2009 Flume 224, 2009 Health Ontario 210, 2006 Elkins 158] Choosing the most appropriate airway-clearance device or technique for an individual patient requires integral knowledge of device function and limitations, as well as an assessment of the patient's cognitive ability and the severity of pulmonary impairment. [2013 Volsko215] There was limited evidence that PEP was preferred by participants compared to other techniques, but this finding is from studies of low quality [2006 Elkins 158]. A study on five patients showed an improvement of gas mixing in patients after a PEP therapy [2004 Darbee 227]. A long-term study in children with CF compared the Flutter with the PEP mask and found a greater decline in forced vital capacity (FVC), increased hospital admissions, and increased antibiotic use with the Flutter [2001 Mc Ilwaine]. A study on six patients showed their preference for the Flutter, but no change in their respiratory assessment parameters [1999 Padman 226]. A study on 82 patients discouraged the use of HFCC (wall oscillation) as the primary form of airway clearance [2013 Mc Ilwaine 222].

Young patients

Of 3453 people living with CF in Canada in 2002, 52.4 % of were younger than 18 years. [2009 Health Ontario 210] 243 2009 Problem behaviours and parenting in preschool children with cystic fibrosis. 242 1999 Knowledge of physician prescriptions and adherence to treatment among children with cystic fibrosis and their mothers. 241 2004 Association of observed family relationship quality and problem-solving skills with treatment adherence in older children and adolescents with cystic fibrosis. 235 2011 Parenting adolescents with cystic fibrosis: the adolescents' and young adults' perspectives. 154 2012 Management Issues for Adolescents with Cystic Fibrosis 239 2007 Psychological factors affecting disease activity in children and adolescents with cystic fibrosis: medical adherence as a mediator. 247 2010 The hospitalization and the process of becoming ill through the children's and adolescents' perspective with cystic fibrosis and osteogenesis imperfecta. 240 2010 Depressive symptoms in children with cystic fibrosis and parents and its effects on adherence to airway clearance. 252 2006 Putting it into words: A storybook for latency-aged children with cystic fibrosis and their families.

Adherence

According to different studies, about 60 % of the people with cystic fibrosis have a low or medium adherence to their PEP therapy. Therapy exercices may be tedious and boring, especially for young people [Modi 2010]. However, the adherence of young patients with cystic fibrosis to their to PEP therapy may increase when therapy is presented as a game [Wardini 2013, Oikonomou 2012, Bingham 2012, AAP 2011, Levitt 2008]. 234 2006 Adherence to treatment in children and adolescent patients with cystic fibrosis. 216 2010 Trajectories of adherence to airway clearance therapy for patients with cystic fibrosis. 132 2007 Factors affecting adherence to progressive resistance exercise for persons with COPD 237 2006 A multi-method assessment of treatment adherence for children with cystic fibrosis. 236 2011 Barriers to adherence in adolescents and young adults with cystic fibrosis: a questionnaire study in young patients and their parents. 232 2014 Treatment non-adherence in pediatric long-term medical conditions: systematic review and synthesis of qualitative studies of caregivers' views. 231 2013 Treatment complexity in cystic fibrosis: trends over time and associations with site-specific outcomes. 230 2013 The effect of design on the usability and real world effectiveness of medical devices: a case study with adolescent users.

Technology

129 2012 Current insights and potential benefits for effective teaching and learning in respiratory medicine 125 2013 Exploring new frontiers : the role of simulation as an educational strategy 217 2005 Features and uses of high-fidelity medical simulations that lead to effective learning: a BEME systematic review. 116 2004 The use of technology at home : what patient manuals say and sell vs. what patients face and fear 133 2005 Mobile phone technology in the management of asthma 218 2008 The duality of health technology in chronic illness: how designers envision our future. 136 2013 L’iPad à l’école : usages, avantages et défis. Résultats d’une enquête auprès de 6057 élèves et 302 enseignants du Québec

Games

Breathing exercises are encouraged, but they can be tiresome and easily forgotten, especially by a child who is still relatively active and healthy. an example of biofeedback, or electronically tracking the body’s real-time responses to help subjects learn to control their physiological processes. Just as the controller and platform-based games on Nintendo Wii Fit can act as a personal trainer, the team hypothesized, a game designed along the same lines could build and reinforce lung strength in patients. Recruiting testers was, sadly, easy. “There’s always one or two in the hospital, bored and playing video games, They developed two, both aimed at patients between the ages of 8 and 12. After that age, said Alison Seffels, a sophomore game design major at Champlain College, “they don’t want to do their breathing exercises because the effects aren’t immediate. So we’re trying to get them in the habit when they’re younger.” In patient interviews, racing games tested as popular across genders. “A lot of the kids really liked being outside, liked going places,” she said. “But with CF, they have to always be close to a hospital in case things get really bad.” The result of these insights was an exploration game called Creep Frontier that takes a literal view of the patients’ daily battles. “There’s an evil sludge taking over the world, getting on animals and plants, and you get a bubble gun, ith additional funding, this aspect of Creep Frontier could be expanded as a way to unite the players through the Internet. patients develop their own strains of super-bacteria, so there’s a rule that those patients can’t be within 5 feet of other CF patients.” [2008 Levitt 118 ] ------- [2009 Kharrazi 255] These ------ Children find PEP treatment difficult, unpleasant and boring, and it can be hard to get them to do it. By keeping a record of how well the player does in the computer games, a medical consultant can chart the efficiency of their lungs. The games' flexibility means even pre-school children should be able to play at the easiest levels." [2011 U Derby 119] ------ "These are kids who are often lonely and frustrated with their medical treatments, and who turn to video games for fun," said Dr. Bingham, associate professor of neurology and pediatrics at the University of Vermont The researchers decided to capitalize on their patients' penchant for video games by designing software that encourages them to use the breathing techniques. Instead of using a handheld controller, the game is controlled by a digital spirometer, a device that measures how fast and how much air the player breathes out. The medical goal of the games was to increase breathing maneuvers that respiratory therapists believe can help keep the airways of cystic fibrosis patients clearer," Dr. Bingham said Results showed that few subjects were carrying out the recommended huffing with any regularity before the study. During the study, subjects were huffing more than they did before the study, although there was no difference in the amount of huffing in the game period compared to the control period. "Both parts of the study apparently got subjects focused on A surprising result was that even though subjects used the spirometer during game play and the control period, their ability to take a deep breath (termed vital capacity) improved significantly only after game play. "We aren't sure why that improvement happened," Dr. Bingham said, "but it could be that the player's ability to carry out the vital capacity test improved simply because they were practicing this skill more often, and not because of an actual improvement in their lungs." "In sum, we think that these results show that using spirometer games can be a good way to involve children in respiratory therapy," he said. "I think it's ethical and appropriate to meet kids 'where they are' with some engaging, digital games that can help them take charge of their own health." [2011 AAP 120] ----- Making these sessions fun will help your child to learn how to clear their lungs of secretions. The two aims of the ‘breathing games’ are to encourage your child to take bigger, deeper breaths and to learn how to breathe out in different ways. This will help to move and clear secretions from their lungs and increase ventilation. Eventually, your child will learn how to huff and cough and learn the difference between shallow, deep, fast and slow breaths. This awareness of their breathing will help them to perform more formal breathing techniques to clear their lungs, which are taught by the physiotherapist when they are old enough to understand. [2012 CHU Cambridge 121] ------- dragon flying through a system of caves. The user must maintain the pressure at a certain level to be able to control their dragon avatar. The “breaths” indicator refers to how many exhalations they need to complete before the game is over. This is something that is set by their physiotherapist and can be adjusted by their parents in the main menu screen of the game. plant flowers of the same color in their garden. wind which affects the flight path of seeds. mount of seeds available is also limited. pirate boat equipped with cannons. If the player encounters other pirates in the travels and decide to fight them, or get caught up by them the game enters into fight mode. The screen changes showing the two boats from a side view as if one is pursuing the other. The player then gets control of a canon which they can fire. To successfully hit the enemy boat they have to adjust the angle of the canon to hit the moving opponent and fire at the right time. In addition to pirates the player has to look out and avoid water whirlpools 1. More painting and arty games like flowers would be good for Laura’s age group. 2. A game which includes an air brush and some pictures to be coloured in, in colors of your choosing. Blowing causes the air brush to paint. No score system necessary. 3. A racing game. Blowing makes a car or boat race against others. 4. Something involving blowing bubbles around. Where you get to blow bubbles and a dog, cat or other pet chases them around. 5. Something involving blowing a kite into the air and keeping it there. 6. Little girls love fairies. How about blowing which makes fairies fly? 7. Something about blowing up balloons and then they fly away. In terms of preference the preferred game appeared to be flowers. It was also observed that increasing the number of times the child had to breath to control the game resulted in her wanting to stop playing earlier than normal. [2012 Oikonomou 113] ---------- 213 2012 Pilot trial of spirometer games for airway clearance practice in cystic fibrosis. 220 2013 Using a virtual game system to innovate pulmonary rehabilitation: safety, adherence and enjoyment in severe chronic obstructive pulmonary disease. 124 2013 Simulation-based education for non-invasive ventilation 233 2014 Cognitive enhancement through action video game training: great expectations require greater evidence. 250 2012 Moving on: Use of Computer Games During Transitional Care for Young People with Long Term Medical Conditions. 244 2011 Exercise physiologic response during three different video games in cystic fibrosis patients. 137 2011 Customising games for non-formal rehabilitation 221 2013 Active video games and health indicators in children and youth: a systematic review. 229 2010 A breath biofeedback computer game for children with cystic fibrosis. 209 2010 Game-based peripheral biofeedback for stress assessment in children. 214 2008 Use of a smartphone for improved self-management of pulmonary rehabilitation. 248 2008 Engaging breathing exercises: Developing an interactive XNA-based air flow sensing and control system. 245 2013 Xbox Kinect represents high intensity exercise for adults with cystic fibrosis 254 2011 Facilitating Physical Activity and Quality of Life Among Children Living with Cystic Fibrosis and Congenital Heart Disease. 251 2007 The health benefits of interactive video game exercise. 246 2011 Gaming console exercise and cycle or treadmill exercise provide similar cardiovascular demand in adults with cystic fibrosis: a randomised cross-over trial. 208 2006 Betterland: an interactive cd-rom guide for children with cystic fibrosis. 253 2012 The use of singing and playing wind instruments to enhance pulmonary function and quality of life in children and adolescents with cystic fibrosis. ___________________

Indicators

223 2013 Using continuous data tracking technology to study exercise adherence in pulmonary rehabilitation. 219 2009 What medical specialists like and dislike about health technology assessment reports. 238 2009 Open adherence monitoring using routine data download from an adaptive aerosol delivery nebuliser in children with cystic fibrosis. 161 2008 Use of airway clearance techniques in cystic fibrosis clinics in Canada (abstract) Forced expiratory volume in one second (FEV1) was the most frequently measured outcome. [2006 Elkins 158]