**4. Discussion**

All subjects have a confirmed CF, and all presented pancreatic insufficiency, age ranged between 11 and 16 years. Seven subjects had moderate respiratory disease (FEV1pp: 51–79%); four had normal function (FEV1pp: 94–104%). Chronic *Pseudomonas* infection was present in three. All presented a 6-minute walking test within

Airway clearance technique consisted of the use of PEP Mask in all of them. In the 6-month program, 301 educational video calls were performed, which is

Their mean duration was 45 min (range 30–60 min). Each subject received a

During the study period, two subjects dropped out (n°9 and 10; 18%), because

Regarding questionnaires filled in by subjects at the start (Q1) and at the end (Q2) of the project, Q1 (filled by 11 subjects) shows that eight adolescents were pleased to participate in the project, considering it an opportunity to maintain frequent contact with physiotherapists (in four cases) and a way to monitor their home program (in five). Nine subjects adhered spontaneously, but four did it for pleasing parents, and only one boy was forced by them. All subjects considered ACT very important to maintain their health, and their main expectations were to improve technique and receive helpful advice (six subjects) and have the opportunity to demonstrate their independence (two of

The Q2 questionnaire (filled in by nine subjects) shows that ACT was considered important in spite of the effort it requires. All of them were pleased to be enrolled in the study as it was a good opportunity to monitor the way they perform ACT; they have received helpful advice (reported by five of them) or have maintained contact with physiotherapists (by four). Four of them felt

**Issue A**. *Does the subject know why, when, and with which drugs to perform IT and ACT* (possible score for each patient: 0–15)? At the start, 4 out of 11 adolescents did not know the reason for which they must perform the IT/ACT, and they did not perform both the IT and the ACT correctly. At the end, the final scores showed a greater awareness of why airway clearance is important and have shown a better understanding of IT in all subjects but one (mean score at start 6.5 (range 2–13),

**Issue B***. Does the subject properly prepare his/her IT and device* (possible score for each patient: 0–45)? At the first evaluation, almost all were already able to prepare and assemble the devices; at the final one, all subjects were able to prepare and assemble the devices (mean score at start 29.5 (range 13–43), mean score at end 35.8

**Issue C***. Does the subject clean and disinfect his/her devices after therapy* (possible score 0–10)? None but one subject was autonomous in device cleaning and disinfection, leaving this duty to parents, both at the start and end (mean score 2.2 in

The initial assessment of appropriateness in the execution of IT/ACT shows that

seven subjects kept a right posture during IT/ACT and respected the correct sequence of drugs, but after the educational intervention, all of them performed the

**3.1 Results from forms filled by the physiotherapist**

mean score at end 9.6 (range 5–14), (P < 0.01)).

the normal limits (range 557–720 meters).

*Cystic Fibrosis - Heterogeneity and Personalized Treatment*

of school commitments in the afternoon.

75% of the scheduled calls.

them).

emotionally supported.

(range 25–43), (P < 0.01)).

entire sequence IT / ACT appropriately.

both evaluations, NS).

**94**

video call at least twice a week.

Our preliminary experience on a limited number of CF adolescents shows the possibility to perform an educational program by means of online video call. This program was designed to offer online support during home IT and ACT by a respiratory physiotherapist, with the aim of improving knowledge and adherence to respiratory physiotherapy in CF adolescents.

Recent reported experiences on an educational program on inhalation therapy [5] or newborn screening [6] with online video clips do not provide any kind of personal relationship between those who produced the media available online and the CF patient, differently by our program.

New technologies such as video call using smartphones or tablets are used on a daily basis by adolescents; thus we hypothesized that introducing educational programs in their life using these technologies might result in better outcomes. To the best of our knowledge, our study is the first educational program to use online video calls provided by an experienced physiotherapist to monitor IT/ACT. This program gave the opportunity to CF teenagers to develop personal contact with the respiratory therapist in their own homes, beyond the scheduled visits at the specialist center. Our work proved the feasibility of an educational video call program, where adolescents accepted online supervision for their daily IT/ACT and attended 75% of the planned calls.

The main problem we faced was the timing of the video calls, scheduled in the afternoon. In fact, 2 out of 11 patients had to abandon the project because of the video call time coinciding with commitments to school.

ACT monitoring and individualized educational interventions in the short term seem to lead to positive results, such as increased knowledge and better adherence to prescribed therapies by the end of the project.

Patients agreed to receive video calls and maintain frequent contact with the physiotherapist, and the program seemed to improve their autonomy in the management of IT and ACT.

With this study, we have also verified how an aspect of daily care, cleaning, and disinfection of IT/ACT devices is not taken into account as a personal task by teenagers but is constantly referred to one of the parents (usually the mother). An explanation could be also the desire of parents to be sure of the adequacy of cleaning or to be still present in the care of their teenage children.

Since the acquisition of personal autonomy also involves care (cleaning and disinfection) of the tools necessary for the execution of airway clearance, we will implement educational programs on this aspect of care.

The main positive effects of this project were the CF care team showed both the willingness and capability of using modern technologies to communicate with young people and improvement in knowledge, self-management, and autonomy in CF patients.

After the study ended, as a result of the project and in response to our patients' requests, video calls were made available during intravenous home therapy for pulmonary exacerbations, as patients recognized its usefulness in improving adherence.

Making additional resources available to patients outside the CF clinics, at their own home, resulted to be beneficial in reducing the feeling of loneliness during ACT daily performance and may, therefore, promote motivation and ameliorate adherence.

This pilot study has some limitations, including the low number of patients and its short duration. It is well known that educational interventions must be repeated in time, with scheduled follow-up calls to maintain their efficacy. However, the primary outcome was to test the feasibility of an educational program via video calls, and this has been achieved, thanks to a rethinking of the CF health services model, which was delivered to patients' homes via online video calls.

In light of these considerations, the project aiming at promoting the improvement of physiotherapy through video calls is even more relevant because it pursues

On the one hand, it allows a personalized educational intervention aimed at supporting the improvement of techniques and skills by adolescent patients, taking advantage of technology and the Internet, which directly provide a familiar com-

On the other hand, the operator has the opportunity to walk into the homes of

This study was supported thanks to a Grant from GILEAD (Gilead Award 2014). We are grateful to Francesco Fiorini, MD for his linguist revision of the manuscript.

Dear boys and girls, we ask you to fill this questionnaire before the beginning of

The aim is to understand your expectation about this project. The questionnaire

supporting the fatigue that adhering to such demanding regimens involves, especially during adolescence, thus encouraging a gradual autonomy, which is a fundamental objective both for the treatment and for the adherence to the therapies as well as for the growth and for the psychological well-being of our patients.

mon language, appreciated by the youth and able to abolish distance.

*Video Call Educational Program for Cystic Fibrosis Adolescents*

*DOI: http://dx.doi.org/10.5772/intechopen.86074*

2. Video Call Educational Program (Evaluation Form)

children and parents, albeit virtually, reducing the sense of loneliness and

multiple objectives.

**Acknowledgements**

1. Questionnaire #1

3. Questionnaire #2

**A.1 Questionnaire # 1**

○ Yes

○ No

**97**

○ Indifferent

○ I like the technology.

is anonymous; fill only your age and gender. Thanks for your collaboration. Dr. Padoan and Physiotherapists.

**1. Are you happy to be involved in this study?**

**1a. If you answered "yes," please explain why:**

○ It is a way to monitor my physiotherapy.

○ I am happy to receive support in my home treatment.

the study.

**A. Appendix**

The bias of the study is the very small number of patients.

In the future, further studies are needed to explore feasibility/acceptability with a larger number of subjects and clarify the duration needed to maintain positive results in the long term and its usefulness during home therapy for pulmonary exacerbations.

In conclusion, our pilot experience verified the feasibility and acceptability of an online video call educational program designed to improve knowledge and selfmanagement of CF adolescents.

ACT monitoring and educational interventions, performed by video call, significantly improved our patients' ability and knowledge, promoting their adherence to ACT/IT and awareness of the need for greater adherence to the therapeutic program. Their independence has also been promoted. Video call educational programs could be a helpful therapeutic tool in the CF scenario.

#### **4.1 Psychological comment**

The design of this study also arises from the deep consideration of the psychological aspects related to the adolescent world of our age and in particular to the portion of the adolescent world that must live with a chronic disease caused by the presence of cystic fibrosis.

This is particularly true and relevant in a perspective that strongly supports the goodness and efficacy of the treatment being facilitated by the personalization of the therapeutic plan, modulated according to the characteristics and specific resources of the patient it is addressed to.

The current adolescent generation is embodied by the so-called "digital natives," namely, children and teenagers who have grown up hand in hand with the increasingly intensive use of the Internet, in an age where the use of technology breaks deep into everyday life, with a dramatic surge in virtual relationships that change and significantly influence the profile of contemporary adolescents.

Adolescence is a complex age with difficult specific-phase tasks to perform, even more so for the chronically ill adolescent, whose emotional world is permeated by difficult balances.

Girls and boys dealing with the disease are progressively confronted with aspects of themselves and of their pathology that binds them to a condition of dependence and fragility. This condition acquires anti-evolutionary meaning, in stark contrast with the increasing search for emancipation, autonomy, and selfaffirmation.

Parents, in turn, are mainly concerned about their children's health and survival and often tend to limit their autonomy, with an excessive overprotection and control over the care and daily life of their children, thus possibly producing results that are quite opposite to their expectations, i.e., poor adherence to the prescribed therapy and onset of risk behaviors.

Therefore, respiratory physiotherapy represents an extremely delicate and meaningful moment for adolescents with cystic fibrosis, as it is a constant reminder of their chronic condition: they are chronically ill individuals who depend on a treatment they would most like to avoid. Physiotherapy inevitably turns into a battlefield where parents and children fight every day, causing distress and strain on both sides.

*Video Call Educational Program for Cystic Fibrosis Adolescents DOI: http://dx.doi.org/10.5772/intechopen.86074*

In light of these considerations, the project aiming at promoting the improvement of physiotherapy through video calls is even more relevant because it pursues multiple objectives.

On the one hand, it allows a personalized educational intervention aimed at supporting the improvement of techniques and skills by adolescent patients, taking advantage of technology and the Internet, which directly provide a familiar common language, appreciated by the youth and able to abolish distance.

On the other hand, the operator has the opportunity to walk into the homes of children and parents, albeit virtually, reducing the sense of loneliness and supporting the fatigue that adhering to such demanding regimens involves, especially during adolescence, thus encouraging a gradual autonomy, which is a fundamental objective both for the treatment and for the adherence to the therapies as well as for the growth and for the psychological well-being of our patients.

### **Acknowledgements**

This study was supported thanks to a Grant from GILEAD (Gilead Award 2014). We are grateful to Francesco Fiorini, MD for his linguist revision of the manuscript.

### **A. Appendix**

in time, with scheduled follow-up calls to maintain their efficacy. However, the primary outcome was to test the feasibility of an educational program via video calls, and this has been achieved, thanks to a rethinking of the CF health services

In the future, further studies are needed to explore feasibility/acceptability with a larger number of subjects and clarify the duration needed to maintain positive results in the long term and its usefulness during home therapy for pulmonary

In conclusion, our pilot experience verified the feasibility and acceptability of an online video call educational program designed to improve knowledge and self-

ACT monitoring and educational interventions, performed by video call, significantly improved our patients' ability and knowledge, promoting their adherence to ACT/IT and awareness of the need for greater adherence to the therapeutic program. Their independence has also been promoted. Video call educational programs

The design of this study also arises from the deep consideration of the psychological aspects related to the adolescent world of our age and in particular to the portion of the adolescent world that must live with a chronic disease caused by the

This is particularly true and relevant in a perspective that strongly supports the goodness and efficacy of the treatment being facilitated by the personalization of the therapeutic plan, modulated according to the characteristics and specific

The current adolescent generation is embodied by the so-called "digital natives," namely, children and teenagers who have grown up hand in hand with the increasingly intensive use of the Internet, in an age where the use of technology breaks deep into everyday life, with a dramatic surge in virtual relationships that change

Adolescence is a complex age with difficult specific-phase tasks to perform, even more so for the chronically ill adolescent, whose emotional world is permeated by

Parents, in turn, are mainly concerned about their children's health and survival

and often tend to limit their autonomy, with an excessive overprotection and control over the care and daily life of their children, thus possibly producing results that are quite opposite to their expectations, i.e., poor adherence to the prescribed

Therefore, respiratory physiotherapy represents an extremely delicate and meaningful moment for adolescents with cystic fibrosis, as it is a constant reminder of their chronic condition: they are chronically ill individuals who depend on a treatment they would most like to avoid. Physiotherapy inevitably turns into a battlefield where parents and children fight every day, causing distress and strain

Girls and boys dealing with the disease are progressively confronted with aspects of themselves and of their pathology that binds them to a condition of dependence and fragility. This condition acquires anti-evolutionary meaning, in stark contrast with the increasing search for emancipation, autonomy, and self-

and significantly influence the profile of contemporary adolescents.

model, which was delivered to patients' homes via online video calls. The bias of the study is the very small number of patients.

exacerbations.

management of CF adolescents.

**4.1 Psychological comment**

presence of cystic fibrosis.

difficult balances.

affirmation.

on both sides.

**96**

resources of the patient it is addressed to.

therapy and onset of risk behaviors.

could be a helpful therapeutic tool in the CF scenario.

*Cystic Fibrosis - Heterogeneity and Personalized Treatment*


#### **A.1 Questionnaire # 1**

Dear boys and girls, we ask you to fill this questionnaire before the beginning of the study.

The aim is to understand your expectation about this project. The questionnaire is anonymous; fill only your age and gender.

Thanks for your collaboration.

Dr. Padoan and Physiotherapists.

#### **1. Are you happy to be involved in this study?**


#### **1a. If you answered "yes," please explain why:**


○ Because they do not believe that I perform my daily physiotherapy

○ To help me to become autonomous and responsible for my therapy

○ To please my parents, so that they "stress" me less for physiotherapy.

○ Other, please explain.………………………………………………………………

………………………………………………………………………………………………………

*Patient's first and last name: ………………………………………………………… Sex of the patient:* ♂ *Male* ♀ *Female Age of the patient ……………years.*

**A.2 Video Call Educational Program (Evaluation Form)**

○ Because they believe that I do not correctly perform it

○ Being able to perform physiotherapy better than before.

○ Because they want to help me to feel good

*Video Call Educational Program for Cystic Fibrosis Adolescents*

○ Because they want to control me

**5. What do you expect from this project?**

○ To receive advice and useful information.

○ To receive support during my therapy.

○ To feel supported even emotionally.

○ I do not expect anything in particular.

**6. Do you want to tell us something else?**

○ To "earn" a tablet.

**Your age ………**

○ Male

○ Female

○ *Initial*

○ *Final*

**99**

*Evaluation Date:……………..*

*The following assessment is:*

○ *Intermediate (3 months)*

**You are**

○ To prove that I am able to do things well.

○ To waste time that I could use to do something else.

○ To make my parents happy

*DOI: http://dx.doi.org/10.5772/intechopen.86074*

○ Other, please explain…………………………………………………………………
