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Table 4 Views on the usefulness of and barriers to using PROMs and relevant effective methods

From: Routine patient assessment and the use of patient-reported outcomes in specialized palliative care in Japan

Views

Theme (n)

  

n (%)

Usefulness of PROMs

Patients

Improving self-care skills

Gaining an understanding of their own symptoms and changes in symptoms (n = 7)

13 (22%)

   

Participating in treatment and care with a sense of self-management (n = 4)

 
   

Having a sense of self-control (n = 2)

 
  

Facilitating communication with healthcare providers

Opportunity to talk about one's thoughts and feelings to healthcare providers (n = 6)

8 (13%)

   

Feeling that one's healthcare provider is interested in you (n = 2)

 
 

Healthcare providers

Gaining an understanding of patients' conditions

Understanding the patient's pain and condition (n = 17)

25 (42%)

   

Using this information in patient treatment and care (n = 5)

 
   

Sharing information among healthcare providers (n = 3)

 
  

Building good relationships with patients

Facilitating communication with patients (n = 5)

6 (10%)

   

Building good relationship with patients (n = 1)

 
  

Educational benefits for healthcare providers

Training in assessing the scale (n = 6)

7 (12%)

   

Facilitating grief work (n = 1)

 
  

Use in research

Useful for research applications (n = 1)

1 (2%)

Barriers related to the use of PROMs

Patients

Difficulty using PROMs due to incomprehension or cognitive decline

Need a better understanding and more communication about what patients are being asked to assess (n = 13)

34 (33%)

   

Difficulty in numerical evaluation (n = 12)

 
   

Difficulty with navigating PROs due to old age or a decline in cognitive function (n = 9)

 
  

Difficulty using PROMs due to worsening symptoms or a decreased state of consciousness

Difficulty in assessing results due to symptoms of disease progression (n = 5)

8 (8%)

   

Difficulty with PROs due to delirium or a decreased state of consciousness (n = 3)

 
  

Burdensome on patients

Burden due to use of PROMs (n = 4)

5 (5%)

   

Burden from repeated assessments (n = 1)

 
  

Difficulty filling out PROMs due to disease progression

Difficulty in filling out the form due to symptoms or state of consciousness (n = 3)

4 (4%)

   

Distress due to not being able to fill out the form by oneself (n = 1)

 
 

Healthcare providers

Burden on healthcare providers

Burden due to increased workload (n = 6)

20 (20%)

   

Difficulty in quantifying PROs (n = 6)

 
   

Difficulty in ensuring sufficient time for PROs (n = 5)

 
   

Conflict in regard to quantifying assessments as patients' conditions deteriorate (n = 3)

 
  

Lack of staff education on the use of PROMs

Insufficient education of healthcare providers on the use of PROMs (n = 7)

12 (12%)

   

Insufficient education of healthcare providers with respect to PROs (n = 5)

 
  

Difficulty in using PROMs and in linking these measures to care decisions

Difficulties in linking PRO results to care decisions (n = 12)

15 (15%)

   

Difficulties in regard to the timing of PROs (n = 3)

 
  

Need for guidance in the evaluation of PROMs

Lack of comprehensive assessment available from the use of PROMs (n = 3)

4 (4%)

   

Difficulties evaluating the results obtained from the implementation of PROMs (n = 1)

 

Practical effective methods relevant to the use of PROMs

Efforts to reduce the burden on patients

Devising evaluation methods tailored to the patient's condition (n = 20)

45 (41%)

 
  

Selecting PROMs according to the patient's condition (n = 14)

  
  

Consideration of the patients most suitable for the use of PROMs (n = 11)

  
 

Education on using PROMs for healthcare providers

Education on how to use PROMs in clinical practice (n = 14)

21 (19%)

 
  

Education how to use PROMs in general (n = 7)

  
 

Standard procedures for using PROMs

Rules for using PROMs (n = 9)

28 (25%)

 
  

Rules for utilizing the results of PROM evaluations (n = 7)

  
  

Preparing for the introduction of PROMs (n = 6)

  
  

Education on how to describe the results of PROM evaluations in the clinical record (n = 6)

  
 

Awareness and consideration of healthcare providers involved in the evaluation of PROs

Considerations when using PROMs (n = 5)

16 (15%)

 
  

Awareness of staff involved in the use of PROs (n = 11)

  
  1. PROs patient-reported outcomes; PROMs patient-reported outcome measures