How to Improve the Psycho-Social Well Being in Endometriosis Patients?

Patient-Centered Endometriosis Care Can Improve Health-related Quality of Life

Key Points

Highlights:

• This study focuses on the relationship between a woman’s experience with patient-centered endometriosis care (PCEC) and their health-related quality of life (HRQOL). An endometriosis patient’s HRQOL can be improved through PCEC especially by focusing on ‘continuity,’ ‘respect,’ and ‘information.’

Importance:

• Current medical and surgical treatment for endometriosis do not adequately relieve pain, which can then adversely impact the individual’s HRQOL. Thus, it is imperative that researchers find treatments that improve an individual’s psychosocial well-being.

What’s done here?

• Participants in the study lived in the Netherlands, spoke Dutch, and were treated by laparoscopy for Endometriosis in a 2-year period at a specific Dutch Institution.
• The researchers standardized the outcomes of the ENDOCARE questionnaire and the Endometriosis Health Profile-30 (EHP-30) to assess a patient’s experience with PCEC and HRQOL.
• ENDOCARE and EHP-30 scores were modified and converted and standardized to a scale where 0 was the best, and 100 was the worst score.
• Data analysis include revealing cofounders, correlation analyses to determine collinear patient characteristics and simple linear regression analyses for the remaining patient characteristics while controlling for the previously determined cofounders.

Key results:

• The mean overall HRQOL score was 29.3/100,  and HRQOL-subscale scores ranged from 24.4 (for ‘self-image’) to 35.9 (for ‘control/powerlessness’).
• Overall score of PCEC was 38.0/100 and PCEC-subscale scores were ranging from 4.8 (for ‘endometriosis clinic staff’) to 62.1 (for ‘emotional support and alleviation of fear and anxiety’).
• Overall HRQOL was significantly correlated with PCEC-subscale ‘continuity’, and the HRQOL-subscales ‘emotional wellbeing’ and ‘social support’ were correlated to PCEC-subscales ‘information’ and ‘continuity’ and ‘respect’. Overall PCEC and HRQOL-subscale ‘social support’ were also correlated. 
• The multivariable regression analyses with all the PCEC subscales did not reveal any significant relationships.

Limitations of the study:

• The authors cite the small sample size as a potential limitation of the study.
• The absence of any significant relationships in multivariate analyses necessitates alternative scales or subscale analyses.
• The authors of this study believe that large-scale longitudinal research is necessary.

Lay Summary

Endometriosis and its various symptoms can negatively impact an individual’s psycho-social wellbeing.  Additionally, current endometriosis treatments do not adequately alleviate the symptoms and improve a patient’s health-related quality of life (HRQOL). In their article titled “The association between experiences with patient-centered care and health-related quality of life in women with endometriosis” published in Reproductive BioMedicine Online, Apers et al. explore a new type of endometriosis care, namely patient-centered endometriosis care (PCEC). More specifically, the authors quantitatively examined the relationship between a woman’s experience with PCEC and their HRQOL.

The study consisted of Dutch Women with Endometriosis that were treated at a specific Institute in the Netherlands. The researchers consulted the ENDOCARE questionnaire (ECG) and the Endometriosis Health Profile-30 (EHP-30) to ascertain an individual’s experience with PCEC and HRQOL. The results were converted from their respective scale ratings to a scale where 0 is the best score, and 100 is the worst score. After standardization, confounders were determined and various linear regression analyses were conducted while controlling for the previously established confounders.

The mean overall HRQOL score was 29.3, and the mean total PCEC score was 38.0. There was a significant association between the PCEC-subscale ‘continuity’ and overall HRQOL. There was also a significant association between the overall PCEC and HRQOL-subscale ‘social support.’ Another important, significant association occurred between the PCEC-subscales ‘information’ and ‘continuity’ and the HRQOL-subscales ‘emotional wellbeing’ and ‘social support.’ The last significant association occurred between the PCEC-subscale ‘respect’ and the HRQOL-subscale ‘emotional wellbeing.’ The multivariable regression analysis, with all of the PCEC subscales, did not reveal any significant relationship with any of the HRQOL subscales.

This study shows that a patient’s HRQOL can be improved with PCEC, mainly if the PCEC focuses on ‘continuity,’ ‘respect,’ and ‘information.’ That being said, at the end of the publication the authors recommend that further large-scale longitudinal studies be conducted.

Research Source: https://www.ncbi.nlm.nih.gov/pubmed/29191758