Role of visually impaired in screening of diseases and the way forward

Abstract

The role of visually impaired individuals in disease screening can be significant and beneficial. While visually impaired people may have limitations related to their sight, they can still contribute to and participate in various aspects of disease screening owing to their heightened senses, especially touch. It is important to recognize that each visually impaired individual's capabilities and preferences may vary, and their involvement in disease screening should always be voluntary and based on their comfort level. However, by creating an inclusive environment and addressing accessibility barriers, visually impaired individuals may be specially empowered to engage in disease screening, particularly of the breast.

Background

The World Health Organization (WHO) states that around 285 million people worldwide have visual impairment of some form. ¹ The 8.8% of the Indian population with some form of visual impairment have a high unemployment rate. A standardized nine-month vocational training, Medical Tactile Examiners (MTEs) course, holds a great opportunity for people with impaired vision, as it takes into consideration both their needs and special skills. Seven countries, namely Germany, Colombia, Mexico, Nepal, Switzerland, Austria, and India have accredited this training, given to visually impaired women. ¹ Seven MTEs were trained in Delhi's inaugural cohort by NABCBW. Two and a half years later, Enable India, a non-governmental organization (NGO) launched the training in Bengaluru as well. The Indian Cancer Society, National Association for the Blind, Rajiv Gandhi Cancer & Research Centre, Disha Foundation are also implementing partners in this initiative. ³

Introduction

Prof. Maria Hengstberger, a gynecologist in Vienna, introduced the concept in the 1980s to use the blind to screen women for breast cancer in its early stages. While working in Ethiopia, she realized that many women failed to obtain an early diagnosis of breast cancer; and women, blind through trachoma and onchocerciasis, were employed in the detection of breast lumps. The results of these examinations are not available. ⁴

Dr Frank Hoffmann, a German gynaecologist, realized that he was unable to spend enough time to examine his women patients properly for lumps or breast abnormalities. It is known that regular breast cancer screening, early detection, and well-timed treatment are important in improving outcomes for individuals diagnosed with breast cancer. ⁵ Dr Hoffmann proposed a project, “Discovering Hands” in 2006. He saw that studies had proved that, in the absence of sight, blind people develop a heightened sense of touch, as well as of hearing, along with other senses and cognitive functions. ⁶ His project introduced to visually impaired women, with a curriculum of 9 months, a training in Tactile Breast Examination (TBE), after which a standardized examination as Medical Tactile Examiner (MTE) is taken. The training has been offered since 2010, and has been accredited in seven countries. Practitioners are currently only employed in Europe and India.

In MTE, a healthcare professional evaluates a patient's body using touch and physical manipulation, according to an accepted manner in relation to clinical diagnoses. In Clinical Breast Examination (CBE), the physical examination of the breasts is usually performed by a physician, surgeon, nurse or specially trained practitioner. ⁷ Its primary aim is to assess or screen for breast abnormalities, particularly cancer.^8,9 The visually impaired are able to identify abnormal breast lumps 30% more times than other healthcare professionals. ¹⁰ During training, the student uses models (or clinical patients) to aid understanding of the palpation technique and areas to focus on during examination. Five sets of Braille-marked adhesive strips are provided to give clues for a guided examination in order to report exact locations of any abnormalities. ¹¹

Training is also given in clinical history taking and a summary of therapeutic options; in some cases, language training might be needed to include this. The MTE documents her findings and suggests a diagnosis, following which a decision is taken of the need for further assessment.^12,13

Discussion

The advantages are self-evident: (i) Social rehabilitation and their social recognition to the visually impaired, thus empowering these persons and increasing their self-esteem: A woman with vision impairment is empowered. This makes them confident and independent. (ii) Reduction in breast cancer mortality by effective early screening. ¹⁴ (iii) Increased patient satisfaction, as MTEs tend to spend more time with their patients, and are gentler. (iv) MTEs may be used to educate health workers in screening programmes.^15–17

Nonetheless, many medical facilities are hesitant to take on MTEs with impaired vision because of logistical concerns. Some healthcare facilities do not receive enough clients to justify MTEs.

There are also limited resources for expanding the training programme. A requirement of one trainer for every 4–5 trainees makes the programme slow to expand and raises its cost.

Indeed, of the 18 trained MTEs in India, only six are currently actively practicing, the remainder having either opted for more secure government jobs or having quit due to family pressures. ²

Conclusion

A shorter training course is preferred, and its price needs to be reduced. Nonetheless, specific posts could be opened for the visually impaired (as the quality of their work is superior). Further, where palpation is crucial, as, for example, in glaucoma screening ¹⁸ or thyroid disorders, their employment should be preferred.