Patients for patients: Assessing the unmet care and support needs of persons affected by tuberculosis (TB) in the Netherlands, a mixed-methods study.
Currently, a factor limiting the quality of care and the effectiveness of TB programs is the discrepancy between the care and support that is available and provided to patients, and what is really needed by them.
In the Netherlands, treatment success rates are not consistent across people with TB. Treatment adherence and successful treatment completion are influenced by a number of factors: medical, socio-economic, and psychosocial determinants. When we approach TB care only from a biomedical lens, we are viewing it from an outdated perspective. This requires a paradigm shift to a more holistic approach that addresses the multi-faceted determinants of TB.
Patient-centred care offers such a holistic approach and promotes self-determination, joint decision-making, and the prioritization of patient needs, values, and preferences. In the Netherlands, current care and support strategies are predominantly developed based on expert knowledge, thereby neglecting the perspectives of those in the receiving end.
So…what are the real needs of persons with TB?
To address this pressing question, we will conduct the Patients for Patients (P4P) study to bridge this gap by identifying the unmet care and support needs of persons affected by TB, followed by proposed solutions to the identified discrepancies. This way, paving the way for strengthened and patient-centred TB care and support strategies.
With this study we are aiming to inform the optimization of existing interventions and/or ignite the development of new interventions, improving the quality of patient-centred TB care in The Netherlands. Additionally, we will assess what are the factors that impact post-TB health and wellbeing of people after completing their treatment.
About P4P
With financial support from ‘s Gravenhaagse Foundation for TB Control, the P4P study will be conducted in two phases. First, we will collect quantitative data using a survey distributed through TB nurses from participating public health services (PHS) operational in the Netherlands. The survey will help us quantify the existence, magnitude, and frequency of unmet care and support needs of persons affected by TB.
Secondly, with the results from the first stage, we will finetune the topic guide for qualitative interviews with people affected by TB. We will conduct semi-structured in-depth interviews with persons affected by TB for them to provide nuances to the survey results, allowing for a more in-depth understanding of the identified needs and potential interventions to address them.
Who will be eligible for this study?
For this study we will target two different populations, both older than 17 years of age.
- In a first group, we will include persons who have been treated for TB for at least five months and are currently in the Netherlands, or who have completed treatment no more than three months prior.
- The second group, will include those who have completed TB treatment in the last five years and who were treated in the Netherlands.
The population to study needs to live in the Netherlands and speak any of the following languages English, French, Tigrinya, Dutch, Russian, Portuguese, Moroccan, Somali, Amharic, Turkish or Punjabi, and receive/have received care from a public health TB nurse in the Netherlands.
We are currently looking for participants for this study! Do you want to know more about how you can participate and contribute to better and more effective TB and post-TB care and wellbeing? Please, send an e-mail to joeri.buis@kncvtbc.org.