Shingles through the eyes of patients: pain and lack of information about the disease and its treatment methods

The average age of onset of shingles was 68 years. That is why it is so important to take care of prevention at a much younger age. The disease is most often diagnosed (64%) by a primary care physician, and in 22% of cases – in hospital or emergency room. Nearly half of patients (47%) experienced difficulties in getting to a doctor during the diagnosis and treatment of shingles. Patients lack knowledge about the disease, methods of its treatment and prevention, including the possibility of vaccination.

Report: How patients perceive shingles

A report published by the Modern Healthcare Institute entitled “Shingles through the eyes of patients. Prevention – treatment – ​​complications” was based on survey research conducted on a group of 185 patients in two clinical centers: in Krakow and Warsaw. Its publication accompanies the Shingles Awareness Week celebrated on February 26-March 3.

The results of a survey among people who suffered from shingles in the years 2007–2023 show that the biggest and longest health problem experienced after the disease is long-term pain of varying nature and intensity, lasting even for years. Long-term pain – the most frequently mentioned complication of the disease by respondents (58 percent of patients) – may intensify with changes in the weather, bending over, or in response to cold. Paresthesia was indicated as a long-term effect of the disease by 23%. respondents, 6 percent mentioned balance disorders and dizziness. Patients often reported several complications of shingles, including itching and burning of the skin, scars after rash, hearing loss, mood and daily functioning disorders, and side effects of medications.

Patients suffering from postherpetic neuralgia are mainly elderly people, almost always (91%) struggling with comorbidities: most often hypertension (59%) and diabetes (20%). The average age of developing shingles is 68 years. The disease most often began with a sudden attack of severe pain, less often with a rash. The pain was of various nature and intensity, and there were also various paresthesias, e.g. a feeling of heat.

Difficulties in diagnosis and treatment

The disease was most often diagnosed in a primary health care clinic (64% of respondents). In 15 percent patients were diagnosed in hospital, and another 7 percent were diagnosed in the Emergency Department or by the emergency medical team. The surveyed people remained in treatment for an average of 2.5 years due to the problems they experienced after suffering from shingles. About 4 percent people experienced these ailments for more than 20 years.

More than half (57%) of respondents experienced difficulties in the diagnostic and treatment process, which consisted primarily in difficult access to a doctor or too long waits for an appointment. Lack of information or errors in communication, lack of diagnosis or incorrect diagnosis, and ineffective treatment were also mentioned. The patient's path most often included two clinics: family medicine and pain management. As much as 18 percent respondents were treated in three places, and 6 percent – in four facilities.

A large proportion of patients do not have sufficient knowledge about the causes of the disease. 29 percent respondents indicated that it is necessary to disseminate information about the disease itself and its course, and 14% that education about its treatment methods is necessary.

As a result, knowledge about vaccination against shingles is also low. As much as 63 percent respondents did not know that the shingles vaccine even existed until they completed the survey. Only 24 percent patients found out about it during their illness, and only 10 percent had such knowledge earlier, before falling ill. Naturally, respondents indicated that if there were to be changes in the diagnosis and treatment process, they should primarily concern the dissemination of knowledge about vaccinations – this was indicated by 59 percent. people.

Currently, the shingles vaccine is 50% reimbursed for people over 65 years of age with comorbidities that increase the risk of developing shingles. As experts and patients emphasize, from the point of view of public health, it would be beneficial to make it available free of charge to older people and all adults from risk groups, i.e. cancer, HIV and transplant patients.

When asked about their attitude towards vaccinations, the vast majority of respondents (84 percent of responses) declared their willingness to recommend others to be vaccinated against shingles. Only 12 percent were not sure, and only 4 percent people answered in the negative – that they did not want to recommend vaccinations.

Shingles and postherpetic neuralgia

Postherpetic neuralgia (PHN) is a unilateral neuropathic pain that persists for more than 3 months after shingles in the area where the rash occurred(1,2,3). According to epidemiological data, postherpetic neuralgia (PHN) may develop in up to 30% of patients after herpes zoster. PHN is one of the most common complications of this disease and is one of the most common peripheral neuropathic pain syndromes.

The pain caused by postherpetic neuralgia can last for months or even years. The risk of developing neuralgia increases with age, and people over 50 are particularly at risk – it is estimated that as many as 80% of them are affected. cases.

Ph.D. n. med. Małgorzata Malec-Milewska, prof. CMKP, from the Department of Anesthesiology and Intensive Care in Warsaw in the report “Herpes zoster through the eyes of patients. Prevention – treatment – ​​complications” points out that postherpetic neuralgia is difficult to cure and its symptoms may persist for years or even a lifetime. The expert emphasizes: – With the advent of vaccinations for adults, especially the new recombinant Shingrix vaccine for people over 50 years of age, prevention is becoming a realistic goal for Polish patients. Prompt and appropriate treatment of the acute phase of herpes zoster is also advisable, as the duration and severity of pain are considered the primary risk factor for the development of PHN. As professor adds Malec-Milewska: – Prevention is the priority. Therefore, it is the task of primary care physicians and geriatricians to administer the vaccine to patients from at-risk groups.

Commenting on the results of the survey, Magdalena Kołodziej, president of the management board of the MY Patients Foundation, points out: – The study conducted on a group of patients who experienced a serious disease such as shingles perfectly reflects the situation of many patients struggling with various infectious diseases. What is worth paying attention to is the declared difficulty (long waiting time) in access to a doctor. 57% reported such a problem. respondents. This is a common problem that requires a change in the health services system – primarily strengthening the role of primary health care or greater inclusion of other medical professions in patient care.

President Magdalena Kołodziej also points to the need to increase the level of knowledge about diseases and their causes, as well as to build awareness about the possibilities of their prevention thanks to vaccinations – The lack of knowledge – about the causes of the disease and vaccinations – is also very clear from the statements of the surveyed patients. Such knowledge was not provided or was provided only to a limited extent by medical staff. The particularly low percentage of people who were aware that there is a vaccination against shingles indicates an urgent need for information activities in this area, conducted by institutions and organizations that are reliable for patients. This is achieved through the adult vaccination calendar prepared by the Polish Society of Family Medicine in cooperation with our Foundation.

Experiencing pain, whether acute or chronic, affects the patient's mood and perception of reality. Ph.D. n. med. Anna Antosik-Wójcińska, prof. UKSW, head of the Department of Psychiatry of the Medical Faculty of Collegium Medicum of the Cardinal Stefan Wyszyński University, points out: – In neuropathic pain associated with viral infections such as shingles, various types of nerve damage associated with chronic diseases, such as diabetes, patients are exposed to chronic pain, often of high intensity. , which definitely affects the quality of life. The awareness that they have passed the acute phase of the disease and still struggle with pain significantly worsens their mental condition.

Professor Antosik-Wójcińska adds that struggling with pain in many cases can cause mental problems: – All types of viral infections, chronic diseases associated with pain are factors predisposing to depression. Depression and infections are related. These are multidirectional dependencies. Therefore, when we are depressed, we will be more likely to develop, for example, shingles, because we have a reduced immunity. Additionally, depression will make it more difficult to control the disease.