Communicative aspects and coping strategies in patients with Parkinson's disease

ABSTRACT

Purpose:

To investigate, in patients with Parkinson's disease (PD), the coping strategies; the most reported vocal symptoms; and the relation between coping, voice symptoms, and communicative aspects.

Methods:

Seventy-three subjects were included in the sample, 33 of which were participants in the experimental group (EG) with diagnosis of PD and 40 were control subjects, that is, healthy and without vocal complaints. They underwent the following procedures: application of Voice Symptoms Scale (VoiSS), Brazilian Version; Voice Disability Coping Questionnaire (VDCQ), Brazilian Version; and the questionnaire Living with Dysarthria (LwD).

Results:

The EG presented deviations in all protocols: VDCQ, with the most frequently coping strategy being "selfcontrol," VoiSS, with "Impairment" as the most prevalent domain, and LwD, presenting changes in all sections. Vocal signs and symptoms and communicative aspects were shown to have a regular correlation with coping. The correlation between vocal symptoms and communicative aspects was as follows: the greater the impairment in communication, the greater the VoiSS emotional scores and the more they complaint of voice-related signs and symptoms.

Conclusion:

Patients with PD use all kinds of coping strategies, but prefer using self-control. They present several vocal signs and symptoms, and "Impairment" was the most prevalent domain. There are difficulties in all aspects of communication. The higher the occurrence of vocal signs and symptoms, the more the patient reports the difficulties of living with dysarthria, particularly when deviations affect the emotional domain.

Keywords:
Voice; Speech; Dysphonia; Protocols; Parkinson's Disease.

RESUMO

Objetivo:

Investigar as estratégias de enfrentamento utilizadas por indivíduos com doença de Parkinson (DP), os sintomas vocais mais relatados, os problemas de comunicação mais presentes e a relação entre o tipo de enfrentamento, os sintomas vocais e os aspectos comunicativos.

Métodos:

Participaram 73 indivíduos, 33 do grupo experimental, com diagnóstico de DP e apresentando desvio vocal, e 40 do grupo controle (GC), saudáveis, sem desvio vocal. Eles foram submetidos aos seguintes procedimentos: aplicação do Protocolo de Estratégias de Enfrentamento das Disfonias (PEEDBR), da Escala de Sintomas Vocais (ESV) e do Questionário Vivendo com Disartria (VcD).

Resultados:

O grupo experimental (GE) apresentou desvios em todos os protocolos: PEEDBR, sendo a estratégia de enfrentamento mais utilizada a de "Autocontrole", ESV, com o domínio prevalente "Limitação", e VcD, com alteração em todas as seções. O PEEDBR apresentou correlação regular com a ESV e o VcD. Já entre o Questionário VcD e a ESV, verificouse relação direta entre o escore total do VcD e o escore total e o domínio emocional da ESV.

Conclusão:

Pacientes com DP usam todos os tipos de estratégias de enfrentamento, principalmente "Autocontrole". Eles possuem grande quantidade de sinais e sintomas vocais, e "Limitação" foi o domínio mais predominante. Há presença de dificuldades em todos os aspectos que abrangem sua comunicação. Quanto maior a ocorrência de sinais e sintomas vocais, mais o paciente refere ser difícil viver com a disartria, particularmente quando há desvios no domínio emocional.

Descritores:
Voz; Fala; Disfonia; Protocolos; Doença de Parkinson.

INTRODUCTION

Parkinson's disease (PD) is a disorder that causes problems widely described in bodily engines such as bradykinesia, rigidity and resting tremor, and also affects various subsystems involved in the speech process, by hypokinetic dysarthria^{1 2}Almost 90% of patients have problems related to oral communication³ but the voice is affected more quickly and more often than other subsystems⁴ and can be the initial symptom. One-third of patients suffers from dysphonia and presents hoarseness and breathy voice as the most impacting deficit⁵

Usually, communication problems are not caused only by vocal problems, but also by losses reflected in language due to dementia, whose prevalence is estimated in 20-40% of cases⁶ as well as changes in language without association with dementia, which demands special attention from the speech therapist⁷

Treatment of speech and voice disorders in people with PD has been a challenge for professionals, both doctors and speech therapists, and current treatments consist of neuropharmacological therapies, neurosurgical procedures, speech therapy through the approach Lee Silverman Voice Treatment (LSVT^(r) LOUD), which generated data of efficacy and success in the treatment of voice and speech disorders in this population⁸ or a combination of methods^{9 10} Although there are scientifically proven methods for voice therapy for these individuals, more data on their own perception of voice and communication problem are needed to direct the focus and enhance the therapeutic success.

In recent years, focus have been given to the development and validation of vocal self-assessment questionnaires with different conceptual approaches and evaluative criteria such as quality of life, voice handicap, limitation and restriction on activities, vocal performance, or vocal symptoms¹¹ They were spread in speech therapy practice as good tools to bring about data on vocal assessment from the patient's point of view, making it important for the therapeutic process to know how these individuals cope with such changes.

Thus, we selected three protocols for this population: the Protocolo de Estratégias de Enfrentamento das Disfonias (PEED-BR)¹² a version translated and adapted from Voice Disability Coping Questionnaire (VDCQ)¹³; the Escala de Sintomas Vocais (ESV)¹¹ validated for Brazilian Portuguese (BP) from Voice Symptom Scale (VoiSS)¹⁴; and the Questionário Vivendo com Disartria (VcD)¹⁵ translated and adapted from the original Living with dysarthria (LwD)¹⁶

The use of these three instruments allow us to check how individuals face a vocal problem, what the main vocal symptoms are, and how they live with the problems affecting their communication skills, giving them more information on their quality of life and helping in their vocal treatment by implementing strategies focused on limitations and coping.

The aim of this study was, therefore, to investigate the coping strategies used by individuals with PD, the most commonly reported vocal symptoms, the most common problems of communication, and the relationship between coping strategy, vocal symptoms and communicative aspects.

METHODS

The study was approved by an institutional Research Ethics Committee (CEP UNIFESP 86962/12) and all participants signed the informed consent.

Study participants were 73 individuals, 33 allocated in the experimental group (EG) - aging between 45 and 93 years, mean age of 73.96 years (SD = 10.0), 18 men and 15 women - and 40 subjects in the control group (CG), aging from 53 to 99 years, mean age 72.4 years (SD = 10.9), 20 men and 20 women.

Inclusion criteria for EG were diagnosis of PD performed by a neurologist in stages II and III, according to Hoehn & Yahr scale¹⁷; being stable with their specific medications and presenting hypokinetic dysarthria with focus on dysphonia; confirmation by the perceptual analysis of the general degree of vocal deviation; and also the self-assessment of voice quality through a five-point scale with the following items: excellent, very good, good, fair, and poor. The hearing perceptual analysis was performed by an audiologist specialized in voice, which showed mean degree of deviation as "moderate" (average 65.5 on a 100-point scale)¹⁸ and "reasonable" was the most common response upon vocal self-assessment (75.8%), both demonstrating the presence of vocal deviation in individuals with PD.

In CG, inclusion criteria were being a healthy individual, absence of any type of neurological diagnosis, having the same demographic characteristics of EG, and absence of vocal complaints.

Exclusion criteria were the same for both groups: having other laryngeal lesions, no interest or availability to participate in the research, having cognitive disorders and/or psychiatric disorders that could hinder the protocol application, and/or not understanding instructions. We checked the risk for dementia using the Informant Questionnaire on Cognitive Decline in the Elderly (IQCODE)^{19 20} which is an instrument suggested by the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV ) for screening dementia, comprising 16 items in which the informer (caregiver or family) evaluates the patient's current performance in different situations of daily life compared to that observed 10 years earlier. Because of this criterion, there was a loss of 14% of individuals with PD, so the final sample comprised 33 individuals, as mentioned above.

All participants went through the following: application of PEED-BR¹² ESV¹¹ and VcD¹⁵ The term "communicative aspects" comprises ESV¹¹ and VcD¹⁵ The exemplification of sampling and procedures applied in both groups are shown in Figure 1.

Figure 1:
Casuistry and procedures applied in control and experimental groups

PEED-BR¹² was applied to check the coping strategies used by each group, which is a version translated and adapted from the VDCQ protocol¹³ The protocol consists of 10 questions that assess how the subjects react when the condition of their voice is not normal or when they present a voice disorder. It features four coping strategies: reframing, searching for information, self-control, and avoidance/passivity.

ESV¹¹ was used to collect voice signs and symptoms (validated Brazilian-Portuguese version of VoiSS¹⁴ which is an instrument composed of 30 questions comprising three areas: limitation, emotional features, and physical features. Currently, we know that it has a cut-off point on the ROC curve of 16 points, which differentiates dysphonic from healthy people¹¹ The higher the scores, the greater is the perception of the overall level of voice change with regard to the limitation in their use, emotional reactions, and physical symptoms.

The impact of dysarthria in different situations of communication was verified by the VcD Questionnaire¹⁵ which has been translated and adapted from the original LwD¹⁶ which comprises 50 questions divided into 10 sections.

Statistical analysis was performed by comparison between groups and correlations between the protocols used. ANOVA, Pearson correlation, and correlation were applied. The significance level for this study was set at 5% (0.05).

RESULTS

There were significant differences between groups as to all protocols used in this research.

In PEED-BR¹² all kinds of coping strategies and the total score had higher scores in the EG (p<0.001), average of 17.45 (Table 1), and the most used coping strategy was "self-control.".

Table 1:
Scores of protocols of coping strategies for disphonia in experimental and control group

• Caption: PEEDBR = Protocolo de Estratégias de Enfrentamento nas Disfonias; SD = standard deviation

In ESV¹¹ the EG showed significant differences compared to CG (p<0.001), with higher scores in total score (average 45.48) and in all areas of the scale (Table 2). In the EG, the most affected area was the "Limitations" (average 27.88).

Table 2:
Total scores and scores according to domains of Escala de sintomas vocais for experimental and control groups

• Caption: SD = standard deviation; ESV = Escala de Sintomas Vocais

The VcD Questionnaire¹⁵ could distinguish groups in all sections, with the highest scores in EG, average of 177.0 (Table 3). When comparing sections, the average differences between the 10 sections were not considered significant in EG, with emphasis on communication difficulties in different aspects in PD patients.

Table 3:
Scores of the questionnaire Vivendo com disartria for experimental and control groups

• Caption: VcD = Questionário Vivendo com Disartria; SD = standard deviation

Correlations were regular between the results obtained in PEED-BR¹² and scores of ESV¹¹ and VcD¹⁵ (Table 4).

Table 4:
Correlation of the Protocolo de Estratégias de Enfrentamento das Disfonias with Vivendo com Disartria and Escala de Sintomas Vocais for the experimental group

• Caption: PEED-BR = Protocolo de Estratégias de Enfrentamento das Disfonias; VcD = Questionário Vivendo com Disartria; ESV = Escala de Sintomas Vocais

Between VcD¹⁵ and ESV¹¹ there is a good correlation between the total score of VcD¹⁵ and the total score and the emotional domain of ESV¹¹ (Table 5).

Table 5:
Correlation of Vivendo com Disartria questionnaire and Escala de Sintomas Vocais for the experimental group

• Caption: VcD = Vivendo com Disartria questionnaire; ESV = Escala de Sintomas Vocais

DISCUSSION

Oral communication is key in education, at work, in social life, and self-expression of an individual. The prevalence of communication disorders in about 7 million people with PD is particularly high (89%)¹⁰

The voice is among the first disorders shown in such cases, and can lead individuals to experience social isolation, depression, loss of overall quality of life, and work absenteeism.²¹ General quality of life protocols have shown greater impairment in individuals with vocal disorders compared to normal controls, with a worsening of physical, social, and emotional functions, and also mental health^{21 22}

However, not only the voice or other subsystems described in hypokinetic dysarthria^{1 2} such as breathing, resonance, articulation, and prosody cause a loss in communication. Other factors may also have a negative effect, such as deficits in language and cognition. It is thus necessary to apply protocols of different approaches in order to better describe the damage caused in patients' lives.

PEED-BR¹² shows how an individual copes with a vocal disorder. Coping is the cognitive and behavioral strategy the individual uses to deal with the stress caused by a situation, which can be accomplished through thoughts or actions and can change according to different times of the same stressful situation^{12 13 23}

Coping strategies can be divided into emotional and cognitive strategies^{12 23} Individuals who use emotional strategies tend to use tools that help them control the emotion or to relieve it, that is, they use affective strategies to deal with stress. Those who use cognitive coping strategies deal with the problem seeking solutions that change the cause of stress, for example, seeking medical advice^{12 13 24}

There were significant differences in scores between groups regarding PEED-BR¹² All kinds of coping strategies such as search for information, self-control, reframing, and avoidance/passivity had higher scores in the EG. In total score (Table 1), the EG also had higher scores compared to the CG.

When comparing strategies in EG only, the most used coping method was "self-control(Table 1), which means that individuals need to make an effort to regulate their feelings and actions¹² This strategy is part of the emotional approaches, in which tools are used to control the emotion or alleviate it; in other words, patients use an effective resource to handle stress^{12 13 24}

Although the unfavorable impact of voice disorders on quality of life has received much attention recently, little is known about the vocal symptoms that occur and what are the main factors responsible for the drop in overall quality of life²⁵ This aspect is little investigated in voice clinics, but can be a useful tool in the therapeutic process.

Using ESV¹¹ EG has significant differences compared to CG, with higher scores in total score and in all areas of the scale (Table 2). Analysis of EG only shows that the most affected area is "limitation," which features vocal difficulties present in this group due to hypokinetic dysarthria, such as talking down/weak and hoarse voice^{1 2} with emphasis on other important symptoms such as difficulty in calling people's attention, talking in noisy places, vocal fatigue, among others.

The average vocal signs and symptoms in EG was 45.48 points (Table 2), in a total of 120, and the cut-off note that differentiates patients with vocal problems from those without it, was 16 points¹¹; thus, the average in EG was nearly three times higher than the cut-off value. In CG (mean age 72.4 years), mean value was 18.05 points; however, this protocol does not have cut-off values for a specific population of seniors, only for the general population. Although vocal complaints or neurological problems were not reported, one should not dismiss vocal disorders related to age, since these are common among older people (prevalence of 29%), even without a laryngeal diagnosis²⁶ Therefore, more specific self-assessment questionnaires and cut-off points for this age group should also be used because it can provide more accurate data on a possible vocal problem.

Gathering these data, namely, the limiting factors of vocal signs and symptoms with the fact that patients predominantly use a coping strategy with more focus on emotion, the probable cause of difficulties and challenges encountered during their rehabilitation process is therefore understood.

As the voice is not the only parameter that impairs oral communication in patients with PD, the VcD Questionnaire¹⁵ was applied to check, beyond the communicative self-reported deficits, its correlation with the other protocols in our study. The VcD¹⁵ distinguished the groups in all sections with the highest scores in the EG (Table 3). Although this protocol has not been validated, the original one or in Portuguese, the version used in this study was translated and culturally adapted for Brazilian Portuguese. An important aspect that allows to consider the results as at least suitable is that obtained an average 177 points, from a total of 300, which is similar to that found in the application of this questionnaire in one specific population^{15 27}

In EG, comparing sections, average differences between the 10 sections are not significant, although the numerical values are very different (as seen in questions 1, 7, and 10, where values are almost doubled), highlighting the communication difficulties in different aspects in PD patients.

Based on these results, one should not give attention only to vocal issues but also to covering the language and impairment in general communication, so we used this self-assessment questionnaire to help in the treatment.

Studies that have implemented self-assessment protocols for PD patients showed a decline in quality of life caused by vocal and communication disorders^{15 27 28 29} showing that the greater the intensity of the disease, the greater the dissatisfaction with one's own voice²⁸ However, this correlation does not occur with general communication¹⁵ which is changed regardless of disease progression.

Results obtained in PEED-BR¹² have regular correlation with the scores of ESV¹¹ and VcD¹⁵ (Table 4), indicating that having voice-related signs and symptoms and problems in communication does not take the patient to use more coping strategies. This can be explained by the fact that coping is a single factor that has more to do with the life story of the individual than with the signs and symptoms and aspects of communication for this population. The correlation between coping and vocal symptoms, but with the use of other specific protocol, did not show results either even among patients with behavioral dysphonia³⁰

This finding reinforces the need to educate the patient as to how voice signs and symptoms can be an important sign of voice overuse and how much it can increase the risk of a worsening in communications³⁰ It also shows that one cannot ignore the approach of indirect therapy such as orientation and vocal hygiene, even in individuals with neurological and degenerative disease.

The correlation of VcD¹⁵ with ESV¹¹ (Table 5) was considered good between the total score of VcD and the total score and emotional field of ESV, indicating that the greater the loss in communication, the more symptoms and signs are self-reported, and the greater emotional deficit is produced. Added to these results, sensory and perceptual difficulties found in PD patients may postpone the search for rehabilitation, stressing the importance of applying ESV and VcD, in order to actively pursue the perception of signs, symptoms, and their impact on quality of life.

PD has its symptoms extensively described and studied. Within the speech perspective, the main features and aspects of the disease are known to affect the voice and communication, but the assessment and, therefore, treatment should not be based only on general knowledge of what has already been pointed out in the literature. It is very important to know how patients cope with their voice and communication problems, how they deal with their voice symptoms, which often fall short of those seen and characterized by the disease only, as well as how their communication is impacted, so that we can help them build a better quality of life.

CONCLUSION

PD patients use several coping strategies, with emphasis to "self-control." They present many vocal signs and symptoms, with "limitation" being the most prevalent domain. They find difficulties in all aspects of communication. We also noted that when the occurrence of vocal signs and symptoms is higher, particularly in the emotional domain, more patients report the difficulties of living with dysarthria.

ACKNOWLEDGMENT

To the Coordination for the Improvement of Higher Education Personnel (CAPES), for financing this research.

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• 5
  Study carried out at the Universidade Federal de São Paulo - UNIFESP - São Paulo (SP), Brazil.
• Financial support: Coordenação de Aperfeiçoamento de Pessoal de Nível Superior - CAPES.

Publication Dates

• Publication in this collection
  Feb 2016

History

• Received
  04 Mar 2015
• Accepted
  16 July 2015