|Year : 2022 | Volume
| Issue : 1 | Page : 49-54
Impact of communication difficulty on the quality of life in individuals with Parkinson’s disease
Srinivasaraghavan Kavya, Pranav Viswanathan, Radhakrishnan Chella Perumal, Sharon Mizpah Prathana Charan
Department of Speech Language and Hearing Sciences, Sri Ramachandra Institute of Higher Education and Research (DU), Porur, Chennai, Tamil Nadu, India
|Date of Submission||10-Sep-2021|
|Date of Decision||28-Oct-2021|
|Date of Acceptance||09-Jan-2022|
|Date of Web Publication||25-Apr-2022|
Dr. Radhakrishnan Chella Perumal
Department of Speech Language and Hearing sciences, Sri Ramachandra Institute of Higher Education and Research (Deemed to be University), Porur, Chennai - 600116, Tamil Nadu
Source of Support: None, Conflict of Interest: None
Context: Communication plays a fundamental role in life as an essential aspect of relationships, personal development, identity, and social interaction. Parkinson’s disease (PD) gradually affects the ability of individuals to effectively communicate, affecting the abovementioned factors; therefore, it severely affects their quality of life. Aim: To compare the impact of communication difficulty on quality of life between individuals with PD and neurologically healthy (NH) individuals. Methods and Material: A total of 15 individuals with PD and 15 NH individuals, between the ages of 45 and 85 years, participated in this study. Quality of communication life (QoCL) was estimated using the Tamil version of the American Speech-Language-Hearing Association–Quality of Communication Life scale. Results: The Mann–Whitney U test was performed to verify significant differences in the QoCL scores between PD and NH individuals. The mean QoCL scores were observed to be lower in the PD group than those in the NH group across the following three domains: socialization/activities, confidence/self-concept, and roles and responsibilities. However, the QoCL score was significantly different for only two domains: roles and responsibilities (p = 0.00) and socialization/activities (p = 0.00). Conclusion: Identifying the impact of communication difficulty in daily life will help speech–language pathologists in planning communication rehabilitation, prioritization of goals, counselling, structuring client-centered therapeutic strategies, and documenting outcomes to improve the QoCL in individuals with PD.
Keywords: Communication, Parkinson’s disease, quality of communication life, Tamil
|How to cite this article:|
Kavya S, Viswanathan P, Perumal RC, Charan SM. Impact of communication difficulty on the quality of life in individuals with Parkinson’s disease. Ann Mov Disord 2022;5:49-54
|How to cite this URL:|
Kavya S, Viswanathan P, Perumal RC, Charan SM. Impact of communication difficulty on the quality of life in individuals with Parkinson’s disease. Ann Mov Disord [serial online] 2022 [cited 2022 Aug 10];5:49-54. Available from: https://www.aomd.in/text.asp?2022/5/1/49/343843
| Key messages:|| |
Quality of life is influenced by factors such as health, socioeconomic status, personal beliefs, environmental issues, and social relationships. QoCL measurement should be made an important part of the routine assessment for PD patients for a complete understanding of the impact of PD on patients.
| Introduction|| |
Communication plays a vital role in life as an essential part of relationships, personal development, identity, and social interaction. Communication is severely affected in individuals with Parkinson’s disease (PD). It is the third-most common neurodegenerative disorder, predominantly occurring in men above the age of 60 years. It is estimated that approximately 6.3 million people are affected by PD worldwide. The WHO has estimated a crude prevalence of 160 per lakh individuals and an estimated incidence of 16–19 per lakh every year.
PD is a progressive neurodegenerative disease associated with selective loss of dopamine in the substantia nigra. Individuals with PD exhibit hypokinetic dysarthria and classic features such as resting tremor, rigidity, bradykinesia, and loss of postural reflexes.
The dysarthric problems related to voice and fluency challenge the intelligibility of speech and affect communication, as well as the psychosocial functioning of the affected individual; therefore, these PD characteristics affect the quality of communication life (QoCL).
Various types of measurements are available to quantify health-related quality of life in individuals with PD. Generic measurements include a 36-item short-form health survey and sickness impact profile, disease-specific measurements include a 39-item PD questionnaire and Parkinson’s Disease Quality of Life Scale, and well-being measurements include personal well-being index and a 100-item World Health Organization Quality of Life questionnaire. However, these measurements do not focus on the impact of communication impairment on quality of life. Only few scales are available to assess the impact of communication impairment in individuals with PD. One such scale is the Quality of Communication Life (QCL) scale. This scale mainly focuses on assessing the impact of communication impairment in an individual’s life. QoCL is defined as “the extent to which a person’s communication acts, as constrained within the boundaries drawn by personal and environmental factors, and as filtered through this person’s perspective, allow meaningful participation in life situations.”
Studies on quality of life (QoL) and QoCL have been explored in neurocommunication disorders such as aphasia and dysarthria. The findings of these studies reported that the QoCL scores of individuals with aphasia were lower than those of healthy individuals., QoCL studies have not yet attempted to estimate the impact of dysarthria consequent to PD on individual’s life. A general quality of life study on neurologically healthy (NH) elderly individuals and patients with PD revealed that those with PD had poor perception of QoL consequent to the impact of dysarthria compared to NH individuals.
A study on the quality of life in the dysarthric speaker revealed that individuals with hypokinetic dysarthria exhibited a higher level of impairment for speech characteristics, situational difficulty, compensatory strategies, and perceived reactions of others than individuals with flaccid dysarthria.
The presence of voice and speech problems associated with dysarthria in people with PD has the potential to decrease functional communication. Even a mild degree of impairment causing dysarthria can influence the speech perceptions of the listener. Furthermore, a speaker may produce negative attitudes or discrimination with dysarthria, contributing to decreased QoL.
Symptoms of PD are exhibited due to alterations in the basal ganglia circuit. This is due to the decreased level of dopamine in the substantia nigra pars compacta. Physiological abnormalities associated with voice and speech changes in people with PD include reduced vocal fold adduction and asymmetrical patterns of vocal fold vibration,, reduced neural drive to laryngeal muscles, poor reciprocal suppression of laryngeal and respiratory muscles, and a reduction in respiratory muscle activation patterns; these factors contribute to the perceptual feature of remarkably decreased loudness. This voice deficit can markedly affect the quality of communication in individuals with PD.
The findings of western studies cannot be generalized to the Indian population considering the cultural and attitude differences. There is a dearth of studies on the impact of communication difficulty on QoL of individuals with PD in the Indian context. The extent of the impact of communication difficulty on various domains such as socialization, confidence, roles and responsibilities, and emotional health remains unclear.
The aim of this study is to compare the impact of speech, language, and communication difficulty on QoL between individuals with PD and NH individuals. The QoCL information obtained through this study will aid speech–language pathologists in the development of client-centered therapeutic strategies for the management of communication disorders in individuals with PD.
| Method|| |
A total of 15 individuals with PD and 15 NH individuals consisting of eight men and seven women aged between 45 and 85 years (mean age: men = 75.5 years and women = 61.4 years) in both groups participated in this study. Socioeconomic status was indexed by grade of employment, with participants divided into high, intermediate, and low status groups. Both groups consisted of six high-, five intermediate-, and four low-status groups. Educational level was indexed into high school graduate and college graduate. There were eight high school graduates and seven college graduates of varying professions in each group. The duration of the disease was between 1 and 8 years in individuals with PD.
All the individuals with PD were under medication. All the participants had hypokinetic dysarthria and had undergone sessions of speech therapy. Speech intelligibility at the conversational level ranged from speech being abnormal but intelligible to speech being severely distorted. This was estimated using the speech intelligibility grading scale of the Frenchay Dysarthria Assessment tool. Participants in both groups had adequate hearing and vision required to perform the experimental task. This was ascertained through informal screening. Cognitive impairment was ruled out by informal screening for short-term memory, attention, language, and executive functions. All individuals in the PD and NH groups exhibited normal cognitive abilities. No other specific issues were reported by the participants.
QoCL was estimated using the Tamil version of the American Speech-Language-Hearing Association-QCL sale. The scale consists of 18 items, among which 17 are grouped under three domains such as socialization/activities, confidence/self-concept, and roles and responsibilities representing QoCL. The eighteenth item corresponds to the overall QoL.
There are seven statements in the socialization/activities domain. This domain measured the struggle involved in the following communication activities affecting socialization in various environments: likes to talk to people, staying in touch with family and friends, participating in conversations, satisfying the communication needs of the job, following news, sports and stories, and communicating through the telephone.
Six statements of QCL focus on confidence/self-concept. This domain measured the individual’s perception of confidence/self-concept, such as confidence in communicating with others, voicing one’s own opinions, and liking his/her self-identity.
Roles and responsibilities
Four statements assess the impact of communication on roles and responsibilities. This domain measures the individuals’ roles and responsibilities in everyday life situations, such as an individual’s roles in the family are unaltered and fulfilling household responsibilities.
The study was approved by the institutional ethics committee. The participants provided written, informed consent before the commencement of the study. QCL was administered only when the mood was reported to be good by the participants. Information from individuals with PD was collected from two private hospitals in Chennai. A datasheet was used to obtain the following information: age; sex; marital status; education; nature of job; retirement details; and number of years of PD such as physical symptoms like tremor, rigidity, bradykinesia, medications, surgical details (if any), ambulatory mode, postural stability, sensory (hearing and vision) impairment, cognition, and speech and language parameters. In addition, information on speech–language therapy and other rehabilitation, living arrangement, and family support were obtained. QCL was administered to individuals with PD and NH individuals. This scale was administered on participants in a quiet room and only when the participant was able to follow instructions and read sentences in Tamil. Each participant took 15–25 minutes to complete the entire scale.
Scoring and analysis
Each statement in the QCL questionnaire consisted of a simple line drawing, representing the extreme attributes presented at either extremity of the visual analogue scale. Participants were instructed to read the sentences in the questionnaire and mark their responses in the QCL scale. This scale had five equally spaced referents corresponding to a numerical value. One indicated the lowest score and five indicated the highest score. The response was rounded up to the next higher referent when it was marked in between any two corresponding referents. The investigator scored only the statements that were answered by the participants. No numerical values were assigned to the statements that were not applicable to the participants. Assistance was provided, in case of difficulty with marking on the scale.
The QoCL scores for each participant were calculated by dividing the total scores obtained in the statements (1–17) by the total number of statements scored. The QoL scores were obtained from the eighteenth statement.
The mean QoCL and QoL scores were analyzed and compared between PD and NH individuals. Mean and standard deviation were calculated for the scored responses among the two groups. Data were analyzed Using the SPSS statistical software version 23.0 (IBM, Armonk, New York, NY). The Mann–Whitney U test was performed to verify significant differences (p < 0.05) between PD and NH individuals.
The following comparisons were conducted between the PD and NH groups:
- Comparison of overall QoCL and QoL between both groups
- Comparison of QoCL across three domains (socialization/activities, confidence/self-concept, and roles and responsibilities) between both groups
| Results|| |
1. Comparison of overall QoCL and QoL between both groups
As presented in [Table 1], overall mean QoCL and QoL scores were lower in PD than NH individuals. The overall mean scores were significantly different (p ≤ 0.05) between the two groups (mean PD = 4.08 and mean NH = 4.82) for QoCL. In addition, the overall mean QoL scores were significantly different (p ≤ 0.05) between the groups (mean PD = 4.00 and mean NH = 4.93).
2. Comparison of QoCL across the three domains (socialization/activities, confidence/self-concept, and roles and responsibilities) between both groups
As presented in [Table 2], the mean QoCL scores were observed to be lower in the PD group than the NH group across all three domains. However, the QoCL score was significantly different (p ≤ 0.05) only for roles and responsibilities (mean PD = 3.68 and mean NH = 4.83) and socialization/activities (mean PD = 4.15 and mean NH = 4.83).
|Table 2: Comparison of QoCL across three domains (socialization/activities, confidence/self-concept, and roles and responsibilities) between both groups|
Click here to view
| Discussion|| |
1. Comparison of overall QoCL and QoL between both groups
The significant difference in the overall mean score between both groups for QoCL and QoL indicated that the individuals with PD experience communication difficulty due to reduced loudness, monotonous voice, changes in intonation, altered rate of speech, hoarse and breathy vocal quality, and articulatory imprecision with reduced speech intelligibility unlike NH individuals. This has a great impact on their QoCL. NH individuals performed better, which could be attributed to their ability to communicate for longer periods of time with adequate vocal loudness and speech intelligibility in various situations without any difficulty. This finding is in accordance with a study by Longstreth et al. who found that PD individuals indicated the highest dysfunction in the areas of communication, home management, and recreational activities. Similar findings were observed in a study conducted by Pallavi et al. in a Tamil population with Broca’s aphasia, where overall QoCL and QoL scores were poorer in individuals with aphasia than NH individuals.
Dissatisfaction in communication affected the daily activities of individuals with PD and had negative impact on QoL. In addition to speech and communication difficulties, many individuals reported restricted physical functioning due to tremor, bradykinesia, rigid muscles, and impaired posture and balance. The QoL results are in concurrence with the findings by Lirani-Silva et al., who reported that motor and communication impairments consequent to the disease had a negative effect on QoL in individuals with PD. QoL is influenced by factors such as health, socioeconomic status, personal beliefs, environmental issues, and social relationships., QoL measurement should be made an important part of the routine assessment for PD patients to obtain a complete understanding of their difficulties. In addition, depression contributed to the negative impact of QoL in individuals with PD.
2. Comparison of QoCL across the three domains (socialization/activities, confidence/self-concept, and roles and responsibilities) between both groups
Mean scores of roles and responsibilities were observed to be lower than those of the other two domains. The results of the current study are in line with findings of a study conducted in an aphasic Tamil population. This could be because individuals with PD experience most difficulties while performing household activities such as shopping, cooking, etc. This is due to motor impairment that manifests as tremor, rigidity, and speech impairments such as reduced loudness and an altered rate of speech that affects their speech intelligibility in noisy environments and group communications.
Decreased participation in social activities such as staying in touch with friends/family, conversing over the telephone, and attending social gatherings could be due to communication difficulty and physical impairment. This could be attributed to an increased risk of falls due to gait problems and speech and voice alterations that affect their interpersonal interactions during social communication. Individuals with PD depend on their family members and friends to communicate their needs, leading to decreased activity levels and increased dependency. PD individuals experience prosodic changes and alterations in the fundamental frequency of voices. This observation was marked in the PD group during the initial stages along with physical and cognitive problems. This, in turn, causes social isolation and dissatisfaction with communication, establishing a negative effect on QoL and affecting socialization. Individuals with PD felt that their illness restricted their day-to-day activity, decreased socialization among their groups, and restricted their ability to have a “meaningful” contribution to society.,,
In addition, it is evident that if their personal factors such as education, habits, personality, and support systems at home and in the work environment are positive, the quality of communication life in individuals with PD is better
| Conclusion|| |
In conclusion, QoCL, the domain-specific QoCL, and QoL scores in individuals with PD were lower than those in NH individuals. Individuals with PD rely on others to communicate their needs and sometimes avoid interacting and socializing. Identifying the impact of communication difficulty in daily life will help speech–language pathologists in planning communication rehabilitation, prioritization of goals, counselling, structuring client-centered therapeutic strategies, and documenting outcomes to improve the QoCL in individuals with PD. Our study highlights the impact of communication difficulty on QoL in Tamil-speaking individuals with PD. Future research can be extended to explore QoCL in cognitive communication disorders and other neurological conditions.
Declaration of patient consent
The authors certify that they have obtained all appropriate patient consent forms. In the form the patient(s) has/have given his/her/their consent for his/her/their images and other clinical information to be reported in the journal. The patients understand that their names and initials will not be published and due efforts will be made to conceal their identity, but anonymity cannot be guaranteed.
Authors would like to acknowledge the support provided by the management of Sri Ramachandra Institute of Higher Education and Research (Deemed to be University), Chennai. We would also like to appreciate the cooperation extended by the participants and their family members during the process of the study.
Kavya Srinivasaraghavan, Pranav Viswanathan contributed towards study design, data collection, statistical analysis, literature overview and discussion. Radhakrishnan Chella Perumal, Sharon Mizpah Prathana Charan contributed towards concept, study design, literature overview and discussion.
Ethical compliance statement
We confirm that this study was conducted in accordance with the latest ICMR national ethical guidelines for Biomedical and Health research involving human participants and other applicable regulations and guide-lines. We have complied with all guidelines and have obtained approval from the institutional ethics committee.
Financial support and sponsorship
Conflicts of interest
There are no conflicts of interest.
| References|| |
Cruice M, Worrall L, Hickson L, Murison R Finding a focus for quality of life with aphasia: Social and emotional health, and psychological well-being. Aphasiology 2003;17:333-53.
Das SK, Sanyal K Neuroepidemiology of major neurological disorders in rural Bengal. Neurol India 1996;44:47-58.
Saikia A, Hussain M, Barua AR, Paul S An insight into Parkinson’s disease: Researches and its complexities. In: Paul S, Bhatia D, editors. Smart Healthcare for Disease Diagnosis and Prevention. San Diego, CA: Academic Press; 2020. p. 59-80.
World Health Organization. Atlas: Country Resources for Neurological Disorders. 2004th ed. Geneva, Switzerland: World Health Organization; 2004. p. 52.
Duffy JR Motor Speech disorders-E-Book: Substrates, Differential Diagnosis, and Management. Elsevier Health Sciences; 2013.
Sapir S, Pawlas A, Ramig L, Countryman S, O’BRIEN C, Hoehn M, et al
. Speech and voice abnormalities in Parkinson disease: Relation to severity of motor impairment, duration of disease, medication, depression, gender and age. NCVS Status Progress Rep 1999;14:149-61.
Walshe M, Miller N Living with acquired dysarthria: The speaker’s perspective. Disabil Rehabil 2011;33:195-203.
Friedlander C Health-related quality of life in individuals with Parkinson’s disease, University of Washington. Unpublished Masteral Dissertation, 2018.
Paul D ASHA quality of communication life scale. In: Encyclopedia of Clinical Neuropsychology. Cham: Springer International Publishing; 2017. p. 1-4.
Paul DR, Frattali CM, Holland AL, Thompson CK, Caperton CJ, Slater SC Quality of Communication Life Scale. Rockville, MD: American Speech-Language Hearing Association; 2004.
Pallavi J, Perumal RC, Krupa M Quality of Communication Life in individuals with Broca’s aphasia and normal individuals: A comparative study. Ann Indian Acad Neurol 2018;21: 285-9.
Lirani-Silva C, Mourão LF, Gobbi LTB Dysarthria and quality of life in neurologically healthy elderly and patients with Parkinson’s disease. CoDAS 2015;27:248-54.
Piacentini V, Zuin A, Cattaneo D, Schindler A Reliability and validity of an instrument to measure quality of life in the dysarthric speaker. Folia Phoniatr Logop 2011;63:289-95.
Miller N, Noble E, Jones D, Burn D Life with communication changes in Parkinson’s disease. Age Ageing 2006;35:235-9.
Damier P, Hirsch EC, Agid Y, Graybiel A The substantia nigra of the human brain: II. Patterns of loss of dopamine-containing neurons in Parkinson’s disease. Brain 1999;122:1437-48.
Perez KS, Ramig LO, Smith ME, Dromey C The Parkinson larynx: Tremor and videostroboscopic findings. J Voice 1996;10:354-61.
Smith ME, Ramig LO, Dromey C, Perez KS, Samandari R Intensive voice treatment in Parkinson disease: Laryngostroboscopic findings. J Voice 1995;9:453-9.
Baker KK, Ramig LO, Luschei ES, Smith ME Thyroarytenoid muscle activity associated with hypophonia in Parkinson disease and aging. Neurology 1998;51:1592-8.
Vincken WG, Gauthier SG, Dollfuss RE, Hanson RE, Darauay CM, Cosio MG Involvement of upper-airway muscles in extrapyramidal disorders: A cause of airflow limitation. N Engl J Med 1984;311:438-42.
Solomon NP, Hixon TJ Speech breathing in Parkinson’s disease. J Speech Language Hearing Res 1993;36:294-310.
Cardoso R, Guimarães I, Santos H, Loureiro R, Domingos J, de Abreu D, et al
. Frenchay dysarthria assessment (FDA-2) in Parkinson’s disease: Cross-cultural adaptation and psychometric properties of the European Portuguese version. J Neurol 2017;264:21-31.
Longstreth WT Jr, Nelson L, Linde M, Muñoz D Utility of the sickness impact profile in Parkinson’s disease. J Geriatr Psychiatry Neurol 1992;5:142-8.
Madhupreetha U Quality of Communication Life (QoCL) in persons with expressive aphasia with and without communication intervention- A comparative study, Sri Ramachandra Institute of Higher Education and Research Institute. Unpublished Masteral Dissertation, 2016.
Soh S-E, Morris ME, McGinley JL Determinants of health-related quality of life in Parkinson’s disease: A systematic review. Parkinsonism Relat Disord 2011;17:1-9.
Soleimani MA, Bastani F, Negarandeh R, Greysen R Perceptions of people living with Parkinson’s disease: A qualitative study in Iran. Br J Community Nurs 2016;21:188-95.
Schrag A, Jahanshahi M, Quinn N What contributes to quality of life in patients with Parkinson’s disease?. J Neurol Neurosurg Psychiatry 2000;69:308-12.
Wressle E, Engstrand C, Granérus A-K. Living with Parkinson’s disease: Elderly patients and relatives perspective on daily living. Aust Occup Ther J 2007;54:131-9.
Dauwerse L, Hendrikx A, Schipper K, Struiksma C, Abma TA Quality-of-life of patients with Parkinson’s disease. Brain Inj 2014;28:1342-52.
[Table 1], [Table 2]