ESPN 54th Annual Meeting

ESPN 2022


 
IDENTIFYING AREAS FOR IMPROVEMENT IN PATIENT EXPERIENCES OF CHILDREN WITH KIDNEY AND ONCOHEMATOLOGICAL DISEASES AND THEIR PARENTS: A FOCUS GROUP STUDY
KAROLIS AZUKAITIS 1 GODA VAITKEVICIENE 1 BIRUTE MOCKEVICIENE 2 AUGUSTINA JANKAUSKIENE 1 DANGUOLE JANKAUSKIENE 2

1- CLINIC OF PEDIATRICS, INSTITUTE OF CLINICAL MEDICINE, FACULTY OF MEDICINE, VILNIUS UNIVERSITY, VILNIUS, LITHUANIA
2- MYKOLAS ROMERIS UNIVERSITY, VILNIUS, LITHUANIA
 
Introduction:

Understanding patient experiences within healthcare system is an integral part of patient-centered care and essential for healthcare quality improvement. We aimed to evaluate problematic experiences of children with conditions requiring long-term treatment and their families throughout whole patient journey by the example of pediatric nephrology and oncohematology.

Material and methods:

 We conducted 2 focus groups with purposively sampled children (n=11) and parents (n=12) from Lithuania. Groups consisted of patients and parents of children with long-standing history of glomerular diseases, chronic kidney disease, solid tumors, leukemia and after hematopoietic stem cell or kidney transplantation. Unstructured interviews aiming to assess their experiences requiring improvement throughout different stages of patient journey (diagnosis, treatment, ongoing care and rehabilitation) were conducted. All data were transcribed and then thematically analyzed using content analysis and NVivo package for qualitative studies.

Results:

 Insufficient disease-specific information and psychological support, as well as complicated access to specialized healthcare services were identified as relatively consistent problems throughout all stages of patient journey. Lengthy initial diagnosis process within primary healthcare and perceived poor quality of their services were highlighted during the diagnosis stage. Non-immediate access or procedural complexity to access certain therapies and financial burden on family were additional problems identified during the treatment and ongoing care stages. Inefficient and non-flexible reintegration to educational system and lack of disease-specific knowledge by staff were most important during rehabilitation stage. Lack of empathy from healthcare staff was commonly mentioned across variety of contexts.

Conclusions:

Improving patient information on their health and healthcare plan, psychological support and accessibility to specialized care are top priorities for healthcare improvement in children and their families with kidney and oncohematological diseases. Empathic communication, as well as improvements in diagnostic pathways within primary healthcare and reintegration to education system are important. Results, however, should be interpreted considering country specificity.