The use of telehealth (text messaging and video communications) in patients with cystic fibrosis: A pilot study

Abstract

Background

Poor communications between cystic fibrosis (CF) patients and health-care providers may result in gaps in knowledge and misconceptions about medication usage, and can lead to poor adherence. We aimed to assess the feasibility of using WhatsApp and Skype to improve communications.

Methods

This single-centre pilot study included CF patients who were older than eight years of age assigned to two groups: one without intervention (control group), and one with intervention. Each patient from the intervention group received Skype-based online video chats and WhatsApp messages from members of the multidisciplinary CF team. CF questionnaires, revised (CFQ-R) scores, knowledge and adherence based on CF My Way and patients satisfaction were evaluated before and after three months. Feasibility was assessed by session attendance, acceptability and satisfaction survey. Descriptive analysis and paired and non-paired t-tests were used as applicable.

Results

Eighteen patients were recruited to this feasibility study (nine in each group). Each intervention group participant had between four and six Skype video chats and received 22–45 WhatsApp messages. In this small study, CFQ-R scores, knowledge, adherence and patient satisfaction were similar in both groups before and after the three-month intervention.

Conclusions

A telehealth-based approach, using Skype video chats and WhatsApp messages, was feasible and acceptable in this pilot study. A larger and longer multi-centre study is warranted to examine the efficacy of these interventions to improve knowledge, adherence and communication.

Keywords

Telehealth WhatsApp Skype cystic fibrosis

Introduction

The chronic use of inhaled and systemic medications, nutritional support, physical therapy and regular exercise comprise the daily treatment required to maintain health in cystic fibrosis (CF) patients. The treatment can be troublesome, time-consuming and costly.^1,2 The long-term and demanding nature of these regimens results in poor adherence.³ The reasons for poor adherence among CF patients are numerous, and include little positive reinforcement for adherence⁴ and forgetfulness.⁵ It has been established that patients with CF feel that a good relationship with their clinician is important⁶; the quality of this relationship may be influenced by the availability of the medical staff. To date, few studies have evaluated technologies to improve access to medical services and communication.

The improved life expectancy in CF is partially attributed to specialised care centres. However, access may be difficult for families not located in large cities.² Access barriers related to distance can be partly addressed with the use of telemedicine technologies, which can also minimise burdens of parents missing work, children missing school, and costs and risks associated with travel. The improved health-care access may help in reducing missed appointment rates and increase adherence to recommended therapies.⁷

Mobile phone messaging applications, such as Short Message Service (SMS) and Multimedia Message Service (MMS), may present convenient, cost-effective ways of supporting self-management through medication reminders, therapy adjustments or supportive messages. There is limited evidence that these interventions provide benefits in long-term illnesses, such as diabetes, hypertension and asthma,⁸ as well as in antiretroviral therapy.⁹

In respiratory diseases such as chronic obstructive pulmonary disease (COPD) and asthma, telehealth has been suggested as a potential method of reducing the burden on health-care systems. In pulmonary disease, telemonitoring interventions have been able to identify early changes in a patient’s condition, allowing intervention and avoidance of exacerbation.² Studies of telehealth applications in CF have been small feasibility trials, and none used WhatsApp and Skype-based communications.² WhatsApp is a messenger application for smartphones that uses the Internet to send text messages. Since this area is gaining increased interest, we sought to examine the feasibility and acceptability of a telehealth-based approach, using WhatsApp and Skype communications, in CF patients followed at our centre.

Methods

Participants

This was a single-centre pilot study. The study population consisted of CF patients who were older than eight years of age, followed at our Paediatric Pulmonology Institute, Ruth Rappaport Children’s Hospital. The patients were recruited by one of the physicians during a routine clinic visit. Patients or their legal guardian received an explanation and signed an informed consent. The local Institutional Review Board approved the study.

The patients were consecutively assigned to one of two groups: intervention and control. Three patients who were originally assigned to the study group by consecutive order were later assigned to the control group (two patients were not interested in performing Skype video chats due to busy schedules, and one patient did not have an Internet connection). The intervention included Skype-based online video chats and WhatsApp messages. A member of the multidisciplinary CF team – a doctor, nurse, dietician, chest physiotherapist, psychologist or social worker – performed the Skype chats. Each session was performed by a different team member. The team members were instructed to use supportive, non-judgemental language. Adherence was evaluated during the chats, with an effort to address barriers and solve them. After each chat, the staff member was asked to submit to the principal investigator a free-text description of his/her experience, which was kept with the questionnaires filled in by the subjects. Additionally, every patient in the intervention group received biweekly WhatsApp messages regarding the importance of adherence to the treatment regimen, nutritional support, physical activity and diabetes control. Examples of such messages are: ‘Do your physiotherapy, get it off your chest’, ‘Keep your belly calm, take creon’, ‘Gaining weight = gaining health’.

Demographic data were recorded from the patients’ medical files. All the patients completed age-appropriate versions of the Cystic Fibrosis Questionnaire – Revised (CFQ-R). The CFQ-R score was calculated, with scores ranging from 0 to 100, and higher scores indicating better health. Knowledge and adherence evaluation was performed based on the CF My Way programme.¹⁰ The knowledge questionnaire consists of 33 questions in four domains: lung disease, nutrition, general health and treatment in CF. Each question was scored 1 for a wrong answer and 2 for a right answer. The self-report questionnaire describes the type and frequency of 12 types of common CF therapies. The patients were also asked to grade their satisfaction from their relations with the CF team on a scale of 1–10. Patients in the intervention group completed the questionnaires before and after the intervention, while the control patients completed them in two routine visits three to five months apart.

Statistical analysis

Statistical analysis was performed using IBM SPSS Statistics for Windows v21 (IBM Corp, Armonk, NY). Descriptive statistics were used for the demographic variables, CFQ-R scores and knowledge questionnaire. Differences between the intervention and control groups at the quantitative parameters were performed using a non-paired t-test. Categorical parameters were presented as proportions and compared using Fisher’s exact test. Paired t-tests were used to determine differences in CFQ-R scores and knowledge questionnaire between the beginning and end of the study in each group. A p-value of < 0.05 was considered significant.

Results

Eighteen patients, nine in the intervention group and nine controls, participated in the study. The demographic characteristics, presented in Table 1, were similar in both groups. The patients in the intervention group had a median of five (range 4–6) Skype video chats, and received 22–45 WhatsApp messages during the intervention period. There were some difficulties with scheduling the chats; each chat required two to three attempts. The chats were performed in a comfortable atmosphere while the patient was at his/her own home. The issues raised by the patients and by the team members during the chats are presented in Table 2. As can be seen, the issues that were discussed by every team member matched his/her own area of expertise. The patients enjoyed showing their rooms, and most of them were interested in speaking about their lives beyond the disease – their studies, hobbies and plans. Some chats resembled a ‘virtual visit’ in the patient’s home, with other family members joining the chat. The team felt that the chats enabled better acquaintance with the patients, helped in planning adequate interventions and increased support. A child who was extremely shy and embarrassed became cooperative and opened up during the chat; a patient who seemed lonely and seeking communication was referred to our psychologist for further evaluation and follow-up; a patient who was coughing strongly throughout the chat was asked to come to the clinic for evaluation of his/her respiratory exacerbation. During the Skype chats, we also asked the patients if they read the WhatsApp messages, and all patients reported that they had read them. As a result of this positive experience, our social worker opened a WhatsApp group for the Arabic-speaking patients in our centre.

Table 1.

Demographic characteristic of patients.

	Intervention, N = 9	Control, N = 9	p-Value
Age (years), mean ± SD	21.2 ± 6.2	24.8 ± 11.0	0.39
Age median (range)	21.2 (12.7–32.5)	13.0 (14.2–50.7)
Sex (female)	5 (56%)	5 (56%)	1.00
Religion:
Jewish	2 (22%)	1 (11%)	0.93
Arab: Moslem and Christian	6 (67%)	7 (78%)
Other	1 (11%)	1 (11%)

Table 2.

Issues that were raised by patients and team members during chats.

	Issues raised by patient	Issues raised by team
Doctors	Drug development (2)	Assess pulmonary exacerbation
	Physical symptoms (9)	Medication adherence
Nurse	Inhalation therapies (9)	Assess adherence
	Living style with a chronic disease (3)	Barriers to adherence
Dietician	Food supplements (7)	Adherence to dietary recommendations, vitamins and enzymes
	Frequency of meals (9)
	Difficulties with specific foods (8)
Physiotherapist	Showed physiotherapy devices and nebulisers (9)	Adherence to physiotherapy
	Cleaning of devices (7)	Some personal therapists attended the chats
Psychologist/social worker	Feeling of loneliness (2)	Coping with a chronic disease
	Fear of death (2)	Assess the need of further evaluation

The first column refers to the team member who was interacting with the patient on a given visit. The numbers in parentheses indicate the number of patients who raised the specific issue.

The CFQ-R score was similar between the groups, and did not change during the study. The score was 65.4 ± 15.7 and 62.4 ± 14.3 for the intervention group, and 62.5 ± 26.1 and 65.9 ± 18.09 for the control group, at the beginning and end of the study, respectively. All patients were satisfied with their relations with the CF team (scored 8–10 at the beginning and at the end). One patient in the intervention group rated 4 before and 10 after the intervention. The score of the knowledge questionnaire was also similar between the groups; there was a slight increase in knowledge during the study period in both groups that did not reach statistical significance. The score was 29.3 ± 6.12 and 31.7 ± 7.9 for the intervention group, and 27.3 ± 6.3 and 28.9 ± 6.8 for the control group, at the beginning and end of the study, respectively. In the self-report CF My Way questionnaire, there was a significant increase in reported adherence to hypertonic saline in both groups (p = 0.015). When we compared the combined adherence to inhalations, vitamins, pancreatic enzymes, physiotherapy and physical activity, there was an increase in both groups at the end of the study, which did not reach statistical significance.

Discussion

In this pilot single-centre study, we aimed to examine the feasibility and acceptability of a telehealth-based approach, using WhatsApp and Skype communications, in CF patients followed in our centre. We compared two groups: an intervention group that performed Skype video chats and received WhatsApp messages, and a control group of patients. We encountered some difficulties with recruiting the patients for the intervention group because they did not want to commit to the video chats. With the patients who did participate, we faced two challenges. The first was to find a suitable time for the video chats. Fitting the busy schedule of the patient and the team member was not always simple. The second challenge was the technical aspect, as we encountered technical difficulties with wireless Internet in some of the remote areas. After overcoming the challenges, patients were very satisfied with the intervention. Only one patient asked to stop the WhatsApp messages, but he was enthusiastic about continuing the Skype chats. This patient rated his satisfaction as 4 before and 10 after the intervention. Another patient was interested in performing more Skype chats than planned, and began communicating with the team members with WhatsApp messages.

Several studies have investigated the use of telehealth in chronic diseases. For diabetes, Arora et al. found that text message–based intervention improved medication adherence, decreased emergency department utilisation and slightly improved HbA1c.¹¹ Wood et al. found that telemedicine was equivalent to in-person visits to maintain HbA1c, while decreasing financial burden,¹² and Izquierdo et al. achieved better diabetes care in a school telemedicine program.¹³ Video conferences with family and friends for hospitalised children reduced stress by 37%.¹⁴ A systematic review of mobile technologies for health interventions in chronic diseases found that the potential of the tools is high. In 50 studies, 56% showed improved adherence, and 40% found a significant clinical outcome.¹⁵

As mentioned earlier, adherence to treatment in cystic fibrosis is a substantial issue. The overall rate of adherence was found to be <50%.¹⁶ Low adherence increased the risk for pulmonary exacerbations¹⁷ and predicted higher health-care costs.¹⁸ Group-based activities that include peer support are likely to improve adherence, but are limited due to infection control measures.³ The use of telemedicine opens new perspectives for the patients. It has the potential to optimise cost-effectiveness, efficiency and convenience for patients while allowing clinicians to provide targeted intervention to improve adherence and outcomes.^19,20

Several small studies have examined aspects of telemedicine in CF. A web-enabled cell phone was somewhat likely to improve adherence in adolescents with CF.³ A pilot study demonstrated the feasibility of involving patients as young as seven years in medication administration reminders.⁹ Moreover, monitoring symptoms and making objective measures, such as spirometry and the 3-Minute Step Test, via telehealth were found to be feasible.^1,18 Fadaizadeh et al. found that telespirometry in lung transplant recipients was effective, and led to patient satisfaction, compliance, adherence to study and sense of security.²¹

In our study, we could not detect improvement in knowledge or adherence due to the small patient numbers, but our impression is that the technique is feasible and acceptable. The patients were willing to meet the staff in their own environment, where they felt safe and comfortable, and opened up more easily. We felt that these chats improved the communication with the CF team, and that they have the potential to improve some aspects of care of our patients.

The main limitation of our study is the small number of patients. Also, due to technical issues mentioned before, some of the Skype conversations were delayed. Thus, the intervention period was longer than originally planned.

In conclusion, a telehealth-based approach, using Skype video chats and WhatsApp messages, was feasible and acceptable in a small group of patients in our centre. A larger multi-centre study is warranted in order to examine the use and efficacy of these interventions. Future directions will include implementation of a telehealth-based system as an integrative part of care of patients with CF or other chronic diseases. The use of telehealth may enable closer follow-up of the patients and may help perceiving barriers, benefits and facilitators for treatment adherence. Additionally, during these chats, personal and medical issues can be raised and addressed.

Footnotes

Acknowledgements

The authors acknowledge the statistical help of Mrs. R. Leiba from the Medical Statistics Unit, Rambam Health Care Campus, and the help of Ms Moneera Hanna from our Paediatric Pulmonology Institute.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: the study was supported by an investigator-initiated grant from Novartis.

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