Home | About us | Editorial Board | Search | Ahead of print | Current Issue | Archives | Instructions | Online submissionContact Us   |  Subscribe   |  Advertise   |  Login  Page layout
Wide layoutNarrow layoutFull screen layout
Lung India Official publication of Indian Chest Society  
  Users Online: 810   Home Print this page  Email this page Small font size Default font size Increase font size


 
EDITORIAL
Year : 2010  |  Volume : 27  |  Issue : 1  |  Page : 1-3 Table of Contents   

Health-related quality of life: A neglected aspect of pulmonary tuberculosis


Department of Pulmonary Medicine, Postgraduate Institute of Medical Education and Research, Chandigarh, India

Date of Web Publication20-Jan-2010

Correspondence Address:
Ashutosh N Aggarwal
Department of Pulmonary Medicine, Postgraduate Institute of Medical Education and Research, Chandigarh
India
Login to access the Email id

Source of Support: None, Conflict of Interest: None


DOI: 10.4103/0970-2113.59259

Rights and Permissions

How to cite this article:
Aggarwal AN. Health-related quality of life: A neglected aspect of pulmonary tuberculosis. Lung India 2010;27:1-3

How to cite this URL:
Aggarwal AN. Health-related quality of life: A neglected aspect of pulmonary tuberculosis. Lung India [serial online] 2010 [cited 2019 Jun 17];27:1-3. Available from: http://www.lungindia.com/text.asp?2010/27/1/1/59259

Tuberculosis is one of the leading causes of mortality and morbidity around the world, infecting approximately 8 billion people, with an annual death rate of close to 1 million. [1] India shares almost a third of this global tuberculosis burden. With nearly 2 million incident cases and half a million deaths annually, tuberculosis is certainly an enormous public health problem in this country. [1],[2] The Revised National Tuberculosis Control Programme (RNTCP) devotes considerable attention to diagnosis and therapy of disease using directly observed treatment short-course (DOTS), and a sizeable amount of research is focused on evaluation of strategies for the treatment and prevention of tuberculosis. In general, the programme data in India focuses on outcomes such as mortality and bacteriologic markers of response. However, in addition to clinical symptoms, a tuberculosis patient needs to deal with several physiological, financial, and psychological problems. The symptoms and clinical burden of disease often extend beyond the duration of treatment. Tuberculosis in India also carries a social stigma due to the perceived consequences of infection. Further, the treatment itself may be related with several side-effects. All these aspects of disease and its management have a huge impact on the overall well-being of the patient and the burden of these factors can equal and even exceed the physical impact of illness. [3]

According to the World Health Organization, health is defined as a state of complete physical, mental, and social well-being and not a mere absence of disease or infirmity. The impact of any disease, especially a chronic illness like tuberculosis, on an individual patient is therefore often all-encompassing, affecting not only his physical health but also his psychological, economic, and social well-being. In medical practice, the accepted method of assessing change among patients has been to focus on laboratory or clinical tests. Although these results provide important information regarding the disease, it is often impossible to separate the disease from the individual's personal and social context, especially in chronic and progressive diseases. [4] Kaplan and Bush proposed the use of the term "health-related quality of life" (HRQoL) to distinguish health effects from other factors influencing a subject's perceptions (such as environmental factors or job satisfaction) and constituting a complex, multidimensional construct. [5] One must deviate from the traditional indicators of disease severity and treatment response to capture the overall health status, with a greater emphasis on patient's, rather than clinician's, perspective of disease. An objective assessment of patient's HRQoL represents the functional effects of an illness and its consequent therapy on a patient, as perceived by the patient. HRQoL measures are, however, not a substitute for disease outcomes, but are an adjunct to them. Medical interventions may result in improved functional health status without evidence of physiologic improvement and vice-versa. Several generic and disease-specific questionnaires are now available for quantifying HRQoL in patients with a wide variety of clinical disorders. Almost all instruments have been developed and validated in Western societies and patient groups. The appropriateness of existing HRQoL measures in India is therefore uncertain.

Unfortunately, little attention has been paid to the impact of the burden of illness and its therapy on the HRQoL of patients with tuberculosis. A review of the English literature identified only 60 articles addressing one or more aspects of HRQoL in patients of tuberculosis. [6] This review could not retrieve any study that had utilized standardized generic or disease-specific HRQoL instruments in these patients. More recently, there have been reports on the use of such standardized instruments to assess HRQoL in patients of tuberculosis. [7],[8],[9]

Somatic symptoms reflect patient's physical sensations as a result of disease or its treatmen, and are the most extensively studied HRQoL domain of tuberculosis. However, in most such studies, it is not clear whether the symptoms described were spontaneously reported by patients or elicited by clinicians. [10] The range of symptoms of tuberculosis is broad and patients may report no symptoms or specific single-organ complaints, or present with life-threatening manifestations. The most commonly reported symptoms are fever and cough, which are more common in men and middle-aged individuals. [11],[12] With treatment, symptomatic improvement begins in 2-3 weeks. Persistence of symptoms is generally higher among those who seek delayed treatment. [9]

Physical functioning reflects the capacity of the patient to carry out basic day-to-day activities. Tubercular arthritis is well associated with long-term disability. [13] The disease also moderately affects the non-job daily activities of nearly half of the patients with tuberculosis. [9]

Psychological health takes into account several facets of the individual's mood and emotional well-being. Most patients are worried, frustrated, or disappointed by the diagnosis, and almost a quarter do not initially accept their diagnosis. [9],[14],[15] The economic burden of illness as well as distress about spreading disease to others may also impair the pshycohological health. [16],[17] These negative emotions generally decline during the course of successful antitubercular therapy. [9]

Role functioning encompasses a person's ability to function in designated roles at work, society, and home. Irrespective of their occupation, patients lose 4-10 weeks of work because of disease and its treatment. [17],[18],[19] Patients are also afraid of informing their employers about their diagnosis to avoid losing job or wages. [20] Having a tuberculosis patient in the family increases the workload on the primary caregivers (including wives and mothers), thereby reducing their capacity to generate income and care for other family members. [21] Women with tuberculosis participate less in household activities and, therefore, avoid seeking medical care until the disease is far advanced. [17],[22] In India, it is also common for women with tuberculosis to be rejected by their husbands or be sent away until cured. [22]

Social functioning includes a patient's interaction with other people around him at home, work, and society. The marital impact of a diagnosis of tuberculosis is well known. It is difficult to arrange marriage for boys and, more commonly, girls, suffering from this disease. In many instances, knowledge of diagnosis has resulted in divorces or second marriages. Among patients admitted to isolation facilities, many feel lonely, bored, confined, or abandoned. [10],[23] In other instances, unfriendly health care workers made some patients feel frustrated, threatened, unwelcome, or uncomfortable. [10],[24] After discharge from the health care facility, many patients are not received back into their homes. [25] Even after successful treatment and cure, several patients continue to feel inhibited from visiting acquaintances and from revealing their diagnosis to colleagues or even their spouses. [9] Such discrimination against tuberculosis patients is a key determinant of non-adherence to antitubercular treatment. [26] Patients are known to provide false addresses at tuberculosis clinics to avoid stigmatization of the entire family. [14],[15]

Financial well-being of individuals and families is also affected by tuberculosis and is often related to impairment in role functioning. Although antitubercular therapy is usually provided free as part of health programmes, the other costs of illness and treatment (such as loss of wages, travel to health care facilities, laboratory investigations, management of emergencies, drug-related adverse events, etc.) have to be borne by patients and/or family members. [26] In India, almost a third of patients reported that they could not afford sufficient food, clothing, or books for their children. [17] Many children of parents with tuberculosis are forced to discontinue schooling or start working to contribute to the finances. Patients and families also dig into their savings, borrow money, and sell household articles to fund treatment. [21] Patients may choose to return to work rather than continue therapy as a result of these expenses. [24] A sizeable proportion of patients (31-80%) suffer from financial constraints due to tuberculosis and the misery gets compounded further if the patient is also the sole or primary wage earner for the family. [18],[27]

The data on formal assessment of HRQoL in patients of tuberculosis is rather sparse. Dion et al. evaluated the feasibility of using the Medical Outcomes Study Short Form-36 (SF-36), and the 5-item EuroQol questionnaire in patients with latent, active, or previously treated tuberculosis, and showed these instruments to be reliable. [8] Chamla evaluated the SF-36 during sequential assessment of 102 patients on antitubercular treatment in China and demonstrated improvement in scores over the course of therapy. [7] In India, Rajeshwari and coworkers used a modified SF-36 instrument on 602 patients receiving antitubercular drugs under RNTCP at Chennai and showed substantial impairment in HRQoL, especially among women. [9] All these studies have used generic HRQoL instruments developed in the West. A small study from Delhi recently used the Hindi version of the abbreviated World Health Organization Quality of Life instrument (WHOQOL-Bref) to quantify impairment in the HRQoL in newly diagnosed patients of pulmonary tuberculosis. [28] This generic HRQoL measure has recently been developed and validated in India for use in Indian people as part of a global initiative of the World Health Organization. [29] In addition, Dhingra and Rajpal have recently developed a disease-specific HRQoL instrument (DR-12 scale) from data on patients of tuberculosis treated under RNTCP at Delhi. [30] The DR-12 scale has 12 items over two domains - symptoms and sociopsychological/exercise adaptation, and has shown strong construct validity and responsiveness.

We have recently conducted a prospective longitudinal study on more than 1,000 patients newly enrolled for DOTS at Chandigarh and have used both WHOQOL-Bref and DR-12 scales to summarize the HRQoL in these patients at baseline, at end of the intensive phase of therapy, and at completion of therapy. Our findings suggest that HRQoL is markedly impaired across all domains in patients of pulmonary tuberculosis and improves rapidly and substantially with antitubercular therapy administered under the RNTCP (unpublished data). However, residual impairment in HRQoL, even after successful completion of treatment, is not infrequent. Our experience suggests that locally appropriate HRQoL instruments can be successfully administered under field conditions with good data quality and that these measures show satisfactory validity, reliability, and responsiveness in patients with tuberculosis. There is, therefore, a case to consider HRQoL assessment as an adjunct outcome measure for tuberculosis patients treated through RNTCP in India.

 
   References Top

1.WHO report 2009. Global tuberculosis control: Epidemiology, strategy, financing. Geneva: World Health Organization; 2009.  Back to cited text no. 1      
2.Chakraborty AK. Epidemiology of tuberculosis: Current status in India. Indian J Med Res 2004;120:248-76.  Back to cited text no. 2  [PUBMED]  [FULLTEXT]  
3.Cassileth BR, Lusk EJ, Strouse TB, Miller DS, Brown LL, Cross PA, et al. Psychosocial status in chronic illness: A comparative analysis of six diagnostic groups. N Engl J Med 1984;311:506-11.  Back to cited text no. 3  [PUBMED]  [FULLTEXT]  
4.Bowling A. Measuring disease: A review of disease specific quality of life measurement scales. Milton Keynes: Open University Press; 1995.  Back to cited text no. 4      
5.Kaplan RM, Bush JW. Health related quality of life measurement for evaluation research and policy analysis. Health Psychol 1982;1:61-80.  Back to cited text no. 5      
6.Chang B, Wu AW, Hansel NN, Diette GB. Quality of life in tuberculosis: A review of the English language literature. Qual Life Res 2004;13:1633-42.  Back to cited text no. 6  [PUBMED]  [FULLTEXT]  
7.Chamla D. The assessment of patients' health-related quality of life during tuberculosis treatment in Wuhan, China. Int J Tuberc Lung Dis 2004;8:1100-6.  Back to cited text no. 7  [PUBMED]  [FULLTEXT]  
8.Dion MJ, Tousignant P, Bourbeau J, Menzies D, Schwartzman K. Feasibility and reliability of health-related quality of life measurements among tuberculosis patients. Qual Life Res 2004;13:653-65.  Back to cited text no. 8  [PUBMED]  [FULLTEXT]  
9.Rajeswari R, Muniyandi M, Balasubramanian R, Narayanan PR. Perceptions of tuberculosis patients about their physical, mental and social well-being: A field report from south India. Soc Sci Med 2005;60:1845-53.  Back to cited text no. 9  [PUBMED]  [FULLTEXT]  
10.Marra CA, Marra F, Cox VC, Palepu A, Fitzgerald JM. Factors influencing quality of life in patients with active tuberculosis. Health Qual Life Outcomes 2004;2:58.  Back to cited text no. 10  [PUBMED]  [FULLTEXT]  
11.Banerji D, Anderson S. A social study of awareness of symptoms among persons with pulmonary tuberculosis. Bull World Health Organ 1963;29:665-83.  Back to cited text no. 11      
12.Hongthiamthong P, Riantawan P, Subhannachart P, Fuangtong P. Clinical aspects and treatment outcome in HIV-associated pulmonary tuberculosis: An experience from a Thai referral centre. J Med Assoc Thai 1994;77:520-5.  Back to cited text no. 12  [PUBMED]  [FULLTEXT]  
13.Chow SP, Yau A. Tuberculosis of the knee: A long term follow-up. Int Orthop 1980;4:87-92.  Back to cited text no. 13  [PUBMED]  [FULLTEXT]  
14.Khan A, Walley J, Newell J, Imdad N. Tuberculosis in Pakistan: Socio-cultural constraints and opportunities in treatment. Soc Sci Med 2000;50:247-54.  Back to cited text no. 14  [PUBMED]  [FULLTEXT]  
15.Liefooghe R, Michiels N, Habib S, Moran MB, De Muynck A. Perception and social consequences of tuberculosis: A focus group study of tuberculosis patients in Sialkot, Pakistan. Soc Sci Med 1995;41:1685-92.  Back to cited text no. 15  [PUBMED]  [FULLTEXT]  
16.Mata JI. Integrating the client's perspective in planning a tuberculosis education and treatment program in Honduras. Med Anthropol 1985;9:57-64.  Back to cited text no. 16  [PUBMED]    
17.Rajeswari R, Balasubramanian R, Muniyandi M, Geetharamani S, Thresa X, Venkatesan P. Socio-economic impact of tuberculosis on patients and family in India. Int J Tuberc Lung Dis 1999;3:869-77.  Back to cited text no. 17  [PUBMED]  [FULLTEXT]  
18.Pocock D, Khare A, Harries AD. Case holding for tuberculosis in Africa: The patients perspective. Lancet 1996;347:1258.  Back to cited text no. 18  [PUBMED]  [FULLTEXT]  
19.Aoki M, Mori T, Shimao T. Studies on factors influenceing patients', doctors and total delay of tuberculosis case detection in Japan. Bull Int Union Tuberc Lung Dis 1985;60:128-30.  Back to cited text no. 19      
20.Johansson E, Diwan VK, Huong ND, Ahlberg BM. Staff and patient attitudes to tuberculosis and compliance with treatment: An exploratory study in a district in Vietnam. Tuber Lung Dis 1996;77:178-83.  Back to cited text no. 20  [PUBMED]  [FULLTEXT]  
21.Kamolratanakul P, Sawert H, Kongsin S, Lertmaharit S, Sriwongsa J, Na-Songkhla S, et al. Economic impact of tuberculosis at the household level. Int J Tuberc Lung Dis 1999;3:596-602.  Back to cited text no. 21  [PUBMED]  [FULLTEXT]  
22.Hudelson P. Gender differentials in tuberculosis: The role of socio-economic and cultural factors. Tuber Lung Dis 1996;77:391-400.  Back to cited text no. 22  [PUBMED]  [FULLTEXT]  
23.Kelly-Rossini L, Perlman DC, Mason DJ. The experience of respiratory isolation for HIV-infected persons with tuberculosis. J Assoc Nurses AIDS Care 1996;7:29-36.  Back to cited text no. 23  [PUBMED]  [FULLTEXT]  
24.Barnhoorn F, Adriaanse H. In search of factors responsible for noncompliance among tuberculosis patients in Wardha District, India. Soc Sci Med 1992;34:291-306.  Back to cited text no. 24  [PUBMED]    
25.Rubel AJ, Garro LC. Social and cultural factors in the successful control of tuberculosis. Public Health Rep 1992;107:626-36.  Back to cited text no. 25  [PUBMED]  [FULLTEXT]  
26.Johansson E, Long NH, Diwan VK, Winkvist A. Attitudes to compliance with tuberculosis treatment among women and men in Vietnam. Int J Tuberc Lung Dis 1999;3:862-8.  Back to cited text no. 26  [PUBMED]  [FULLTEXT]  
27.van der Werf TS, Dade GK, van der Mark TW. Patient compliance with tuberculosis treatment in Ghana: Factors influencing adherence to therapy in a rural service programme. Tubercle 1990;71:247-52.  Back to cited text no. 27  [PUBMED]    
28.Dhuria M, Sharma N, Ingle GK. Impact of tuberculosis on the quality of life. Indian J Community Med 2008;33:58-9.  Back to cited text no. 28  [PUBMED]  Medknow Journal  
29.Saxena S, Chandiramani K, Bhargava R. WHOQOL-Hindi: A questionnaire for assessing quality of life in health care settings in India. World Health Organization Quality of Life. Natl Med J India 1998;11:160-5.  Back to cited text no. 29      
30.Dhingra VK, Rajpal S. Health related quality of life (HRQL) scoring in tuberculosis. Indian J Tuberc 2003;50:99-104.  Back to cited text no. 30      



This article has been cited by
1 Factors associated with health-related quality of life among pulmonary tuberculosis patients in Manila, the Philippines
Shoichi Masumoto,Taro Yamamoto,Akihiro Ohkado,Shoji Yoshimatsu,Aurora G. Querri,Yasuhiko Kamiya
Quality of Life Research. 2013;
[Pubmed] | [DOI]
2 Quality of life of patients with pulmonary tuberculosis during treatment course
Robabi, H. and Navidian, A. and Mofrad, Z.P.
Journal of Mazandaran University of Medical Sciences. 2012; 22(93): 111-122
[Pubmed]
3 Socioeconomic impact of TB on patients registered within RNTCP and their families in the year 2007 in Chennai, India
Ananthakrishnan, R. and Jeyaraj, A. and Palani, G. and Sathiyasekaran, B.W.C.
Lung India. 2012; 29(3): 221-226
[Pubmed]



 

Top
 
  Search
 
  
    Similar in PUBMED
   Search Pubmed for
   Search in Google Scholar for
    Access Statistics
    Email Alert *
    Add to My List *
* Registration required (free)  

 
  In this article
    References

 Article Access Statistics
    Viewed4048    
    Printed138    
    Emailed2    
    PDF Downloaded877    
    Comments [Add]    
    Cited by others 3    

Recommend this journal