KWF Pilot survey May 2025.

Authors: KWF scientific committee and Patient partners Mr Sachin Rao, Ms Merlyn Paul 

and Mrs Yangchen Dolma 

Aim: This survey is a patient advocacy initiative of KWF to understand the prevalent practice of prescriptions, medicines purchase, storage and adherence amongst CKD patients. Prior to distribution of the survey amongst the members of KWF and patients of nephrologists participating in this project, a pilot was undertaken with patient partners.

Methods: The draft survey was shared with 31 members of KWF using Google forms and results were collated. These results were discussed and some changes to the survey were made.

Results:

There was a 100% response rate and all questions were answered. 93.5% were patients themselves. 100% gave consent for information to be shared for scientific purposes. 

Demographics:  Less than half were female (48%) and the majority were between ages 36-45 years of age. 96% were graduates and 64.5% were married.

64% were post-transplant, 19% had CKD but not on dialysis and 16% were on dialysis 

Income was listed and the majority had suffered CKD for greater than 10years.

Procuring medicines

Majority got their medicines from private stores or trust/ dialysis centres. Doctors’ appointments dictate buying cycle for nearly half the patients but financial constraints and storage issues were also quoted as having an influence on frequency of purchase of medicines.

Prescription 

35% had more than 10 medicines on their prescription; not all prescriptions were typed (64% typed), most in English and the majority had doctors name, date, name, DOB, duration and generic name of medicines but not all.

Understanding the prescription: Most discuss the prescription with the doctor but a third indicated that the doctor would not routinely discuss side effects. Majority would tell the doctor about other medications they were on and the interaction with herbal / non allopathic medications. Less than half would tell the doctor if the prescribed medication was expensive but 19% said they weren’t aware they could ask for other alternatives.71% would enquire about storage instructions. 51% were very satisfied with the prescription they get and 16% would hesitate to ask the doctors any further questions.

Recommendations 

• Changed the income brackets
• Removed question on marital status 
• Repetitive question in last section removed 
• Language translations can be commissioned

Dr Radha Sundaram, Mr Sachin, Ms Merlyn and Mrs Vasundhara Raghavan

MINUTES OF THE FIRST MEETING OF RESEARCH KWF ON 09/06/2023

The First meeting of Research KWF was held on 09/06/2023 at 8.30 am IST on Zoom.  It was attended by Dr. Radha Sundaram from UK, Mrs.Vasundhara Raghavan, Caregiver and Founder, Mrs. Yangchen Dolma, a transplant  recipient, nurse by profession and Mrs. Rashmi Singh, a care giver. The meeting was held  with Dr. Radha, to seek her assistance in introducing a research committee in KWF to develop research and quality improvement activities. 

1. Improving awareness about dietary phosphorus amongst patients with CKD. 
2. Patient Survey: – a questionnaire survey to identify gaps in patients understanding and compliance with medicines prescribed for CKD by healthcare professionals.

Following points were discussed:

1. Dr. Radha advised the group to establish a formal team with Indian Nephrologists, Dietitian and a patient who is actively involved in social welfare program, involved in patient advocacy work and well versed with procedures involved in establishing due diligence and strict governance. 
2. She stressed on the need to clearly mention in the survey that the information collected will be used by the Foundation, maintaining privacy of individuals so it can be ethical and establish accuracy in data with people willingly participating. 
3. Yangchen would share the draft proposal to Dr. Radha for appropriate changes for enhancing its content to match industry standards.
4. An official invite needs to be sent to people who will be part of the Patient Centric Research Programme.

The next meeting will be held on 3rd September 2023.

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