WHat is the impact of recurrent scabies on young people's daily lives?

Scabies, resulting from an infestation of the skin by the Sarcoptes scabiei mite, attained recognition as a significant public health concern in 2017 when the World Health Organization classified it as a neglected tropical disease. This acknowledgement led to its inclusion in the list of diseases requiring heightened attention and was followed by multiple reports of an increased scabies incidence over the beginning of the 21st century.

The number of scabies diagnoses in the Netherlands also increased over the past decade, particularly in young adults. To improve care for this group with often difficult-to-treat scabies due to their social connectivity and shared housing, the Infectious Disease Control Department of the Amsterdam Municipal Health Service (GGD) in October 2022, established a scabies clinic for young adults aged between 18 and 30. This clinic is designed for patients who suffer from recurrent scabies symptoms where they are examined by a nurse using dermatoscopy, microscopy and/or PCR to diagnose scabies. 

The advantages of this clinic over a general practitioner consultation lie in the emphasis on diagnostics (possibly in consultation with an affiliated dermatologist), comprehensive contact tracing for possible group treatment and assistance in developing a treatment plan together with identifying any potential inaccuracies in their prior treatments. 

Furthermore, attention is paid to the impact on patients’ daily lives and possible psychological consequences of recurrent scabies symptoms when contacting the scabies clinic. Skin diseases such as scabies contribute to the burden of stigma and emotional distress and with that, have profound effects on the overall quality of life. Something which is recognized in patients by the nurses working at the scabies clinic. Young adults contacting the scabies clinic often describe an isolated lifestyle and feelings of hopelessness due to their condition, underscoring that scabies, beyond causing intense itching and other physical symptoms, also has serious effects on patients' daily lives and well-being.

These signs of considerable impact of recurrent scabies symptoms on young adults’ daily lives along with a continuous influx of new patients to the scabies clinic, underline the importance to better understand this impact and describe the course of symptoms after treatment to improve scabies guidance and care in high-income and resource-rich countries. 

Primary objective 1:

• To understand how individuals with recurrent scabies symptoms experience the impact of scabies on their daily lives over time following a visit to the scabies clinic.

Primary objective 2:

• To understand how individuals with recurrent scabies symptoms experience their symptoms over time following a visit to the scabies clinic.

Secondary objectives:

1. To evaluate how individuals visiting the scabies clinic experience the care provided by the scabies clinic.
2. To evaluate how individuals visiting the scabies clinic adhere to the treatment advice provided by the nurses.
3. To evaluate how contacts experienced the care provided by the scabies clinic. 
4. To evaluate how contacts of individuals who visited the scabies clinic adhered to the treatment advice provided by the nurses.

• Prospective study of individuals with recurrent scabies symptoms who visited the scabies clinic at the Public Health Service of Amsterdam for the first time between June 2024 and March 2025. Individuals received the PROMIS-29 Profile v2.1 and PROMIS Social Isolation 8a questionnaires, supplemented with questions on scabies symptoms, immediately after their visit (t0) and at four (t1), eight (t2), and twelve (t3) weeks post-visit. Demographic characteristics and evaluation of the care provided at the scabies clinic were asked immediately after the first visit (t0). Treatment adherence was assessed four weeks after (t1) the initial visit. Refer to the appendices (1-4) for the questionnaires.
• Contacts received questionnaires assessing scabies symptoms immediately after (t0) and six weeks after (t1) their initial contact with the scabies clinic. Demographic characteristics and evaluation of the care provided by the nurses from the scabies clinic were asked immediately after the first visit (t0). Treatment adherence was assessed six weeks after (t1) the initial contact with the clinic. Refer to the appendices (5-6) for the questionnaires.

• Patients: 4 online questionnaires, which are sent at week 0, week 4, week 8 and week 12. 
• Contacts: 2 online questionnaires, which are sent at week 0 and week 6. Questionnaires are validated PROMIS questionnaires supplemented with questions about the course of complaints and questions to evaluate the care provided by the GGD, which have been approved by the GGD research team.

The burden and risks of participation remain very limited for participants, while the potential for positive social impact is great. The study has been carefully designed to minimize the burden on participants as much as possible. There are four measurement moments for patients at which an online questionnaire can be easily completed via an invitation link. The questionnaires have been pre-tested on people who visited the consultation hour before the inclusion period and have been drawn up in consultation with senior researchers. In consultation with a privacy officer, a DPIA has been drawn up to limit the infringement of the privacy of participants to the minimum necessary.