Use of the ‘patient journey’ model in the internet-based pre-fitting counseling of a person with hearing disability: study protocol for a randomized controlled trial
Trials
Use of the 'patient journey' model in the internet- based pre-fitting counseling of a person with hearing disability: study protocol for a randomized controlled trial
Vinaya KC Manchaiah 0 1
Dafydd Stephens
Gerhard Andersson 0
Jerker Rnnberg 0
Thomas Lunner 0
0 Linnaeus Centre HEAD, The Swedish Institute for Disability Research, Department of Behavioral Science and Learning, Linkoping University , SE-58183, Linkoping , Sweden
1 Centre for Long Term and Chronic Conditions, College of Human and Health Sciences, Swansea University , Room 167, Glyndwr Building, Swansea SA2 8PP , United Kingdom
Background: Hearing impairment is one of the most frequent chronic conditions. Persons with a hearing impairment (PHI) have various experiences during their 'journey' through hearing loss. In our previous studies we have developed a 'patient journey' model of PHI and their communication partners (CPs). We suggest this model could be useful in internet-based pre-fitting counseling of a person with hearing disability (PHD). Methods/Design: A randomized controlled trial (RCT) with waiting list control (WLC) design will be used in this study. One hundred and fifty eight participants with self-reported hearing disability (that is, score >20 in the Hearing Handicap Questionnaire (HHQ)) will be recruited to participate in this study. They will be assigned to one of two groups (79 participants in each group): (1) Information and counseling provision using the 'patient journey' model; and (2) WLC. They will participate in a 30 day (4 weeks) internet-based counseling program based on the 'patient journey' model. Various outcome measures which focuses on hearing disability, depression and anxiety, readiness to change and acceptance of hearing disability will be administered pre (one week before) and post (one week and six months after) intervention to evaluate the effectiveness of counseling. Discussion: Internet-based counseling is being introduced as a viable option for audiological rehabilitation. We predict that the 'patient journey' model will have several advantages during counseling of a PHD. Such a program, if proven effective, could yield cost and time-efficient ways of managing hearing disability. Trial registration: ClinicalTrials.gov Protocol Registration System NCT01611129.
Hearing loss; Hearing impairment; Hearing disability; Patient journey; Counseling; Audiological rehabilitation; Internet
-
Background
The term patient journey refers to the experiences patients
go through during their disease and treatment. It is believed
that understanding the patient journey can help the
clinician to gain an insight into the unique experiences of
patients. In the last decade, with increased focus on
patient-centered treatment approaches in healthcare,
studies of the patient journey have become popular. The
patient journey has been studied in various conditions
including: Parkinsons disease [1], locked-in syndrome [2],
pertussis [3], gastrointestinal stromal tumors [4], and
rheumatoid arthritis [5,6]. In our previous studies we
developed patient journey models for adults with gradual-onset
[7,8] and sudden-onset [9] acquired hearing impairment.
Figure 1 shows the patient journey model of adults with
gradual-onset acquired hearing impairment [7]. This
model shows that there are seven main phases in this
process, which include: (1) pre-awareness; (2) awareness;
(3) movement; (4) diagnostics; (5) rehabilitation; (6)
self
Figure 1 Patient journey model of adults with gradual-onset acquired hearing impairment [7].
evaluation; and (7) resolution. Manchaiah et al. argued
that this model could help the clinicians during history
taking to understand at what stage the patient might be
and then to tailor the way they speak to them [7].
Pre-fitting counseling
There is a range of interventions focusing on the
psychosocial needs of people with acquired hearing loss. For
example, counseling-based aural rehabilitation [10]; active
communication education (ACE) [11], rehabilitative online
education [12] and cognitive behavioral self-help program
[13]. However, pre-fitting counseling is mainly used for
assessing and modifying the patients belief, motivation
and expectations towards communication and to provide
information about hearing loss and choice of
interventions. Such counseling sessions could be very important in
the audiological enablement process [14]. Even though
pre-fitting counseling sessions could be potentially
beneficial in various domains, there appears to be very little or
no benefit in terms of the outcome of hearing aid fitting
[15,16]. However, the main reason for pre-fitting
counseling is to support the person with hearing impairment
(PHI) in terms of their emotional and social needs, to
assess and modify attitudes and motivations and to provide
information about the choice of interventions [17], rather
than focusing on hearing aid outcomes.
PHI go through various unforeseen consequences during
their journey thro (...truncated)