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, Jan 2013

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.

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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)


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Vinaya KC Manchaiah, Dafydd Stephens, Gerhard Andersson, Jerker Rönnberg, Thomas Lunner. 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, 2013, pp. 25, 14, DOI: 10.1186/1745-6215-14-25