KUALA LUMPUR, July 16 — Misconceptions and lack of awareness about peritoneal dialysis (PD) continue to hinder its uptake in Malaysia, despite growing efforts to promote it as a viable and sometimes preferable alternative to haemodialysis (HD).
At a symposium on renal replacement therapy in April, nephrologists, health administrators, and patients highlighted persistent barriers to PD adoption, many rooted in patient health literacy, fears of self-care, and systemic knowledge gaps among both the public and health care providers.
“When I first started my training, it was common to hear patients say, ‘I don’t know PD’,” Dr Loh Chek Loong, National Head of Nephrology Service and consultant nephrologist at Raja Permaisuri Bainun Hospital in Ipoh, Perak, told the April 15 symposium organised by the Galen Centre for Health and Social Policy here.
“But from those days until now, we have seen a marked improvement in the uptake of PD in patients under Ministry of Health (MOH) care.”
PD was first introduced in Malaysia in 1981, with the MOH gradually expanding PD services over the years. A formal “PD First” policy — prioritising PD as the initial dialysis modality — was incorporated into MOH’s nephrology operational framework by 2010.
In 2022, the MOH renewed its push for PD First, launching new initiatives to further expand PD access and uptake nationwide. Dr Loh noted that about 40 to 50 per cent of dialysis patients in government facilities are now on PD.
However, challenges remain, particularly for patients who are not followed regularly by nephrologists and may present late with advanced kidney failure.
“One challenge is those who are not under any follow-up. They may come crash-landed. They do not have much time to familiarise and give them a proper pre-diagnosis programme,” Dr Loh said.
He added that incentivising the private sector to play a larger role remains a key issue. Some patients also avoid discussing dialysis options altogether due to fear or fatalism. “There are people who say, ‘I rather not know’,” Dr Loh said.
Patient advocates shared that awareness of PD has improved but remains uneven, especially in earlier years. Khairul Shazwali Taib, a PD patient, said that when he was first diagnosed with kidney failure in 2016, information on PD was limited.
“I believe most of the information that we had was purely on HD, not so much about PD. During that time, the information was very, very limited,” he said.
PD, which allows patients to perform dialysis at home, offers flexibility and the ability to maintain employment or studies. Many patients have successfully adapted to the treatment with adequate training and support. However, some remain hesitant due to concerns about managing the procedure independently.
“The fact that PD, you are on your own, everything is on you. The thought of you having to bear the risk of doing everything on your own, if there’s a risk of infection, it will be on you. So that’s very daunting to patients, especially the older ones,” said Raihana Rosman, another PD patient.
At the same time, patients and clinicians acknowledged that PD can help patients maintain their quality of life. Raihana, who continues to work full-time while managing her dialysis at home, said that while the learning curve was initially steep, she was able to rely on strong support from her family.
Several speakers noted that HD is still commonly viewed as the more familiar or “easier” option because care is delivered at a dialysis centre under professional supervision. “They prefer HD because you just surrender yourself to the centre. You don’t have to think about anything else,” Raihana added.
However, the realities of haemodialysis, such as patients spending long hours in dialysis chairs and suffering from extended post-treatment fatigue, are often overlooked. These factors can significantly disrupt a patient’s quality of life and ability to work.
“Infection risks are talked about more with PD, but they exist for HD too. We just don’t hear about them as much,” Khairul Shazwali said.
Raihana’s father, Rosman, also pointed out the lack of positive storytelling around PD. “We need to hear more success stories. PD allows patients more autonomy and flexibility, but you rarely see these narratives in the media,” Rosman said.
Rosman suggested that a public education campaign could include a national icon or PD ambassador who resonates with younger Malaysians, particularly as diabetes increasingly affects younger age groups.
“The diabetes age has gone down to the younger young age due to diet, lifestyle, and so on and so forth. To capture this cohort of youngsters — of great potential diabetic patients — you have to capture them there. If they see a GP or see an angle, then we may talk about dialysis. If this idea is being sold to them, I’m sure they will be quite receptive,” Rosman said.
In recent years, peer-to-peer patient support groups and social media platforms have helped expand awareness and dispel some misconceptions about PD.
“One of our PD patients, Syahmi, is very active on TikTok. During his live sessions, he answers questions while doing PD exchanges,” Khairul Shazwali said, adding that patient communities on Facebook and other platforms have become valuable sources of support.
However, he called for a more holistic and sustained public education campaign. “We can’t rely only on MOH or patient advocates alone. Social Security Organisation (Socso), the National Kidney Foundation (NKF), and others need to be part of this effort.”
Galen Centre chief executive Azrul Mohd Khalib acknowledged that the MOH has put out social media content on PD, particularly on World Kidney Day, but noted such efforts are often seasonal and lack follow-through.
“It needs to be much more aggressive,” Azrul said. “Fifty-seven per cent of end-stage renal disease cases in Malaysia are due to diabetes. The numbers are only going up, especially among young people. We need to communicate the options before they end up in front of a doctor being told to choose between HD or PD.”
Without decisive intervention, the number of dialysis-dependent patients is projected to exceed 106,000 by 2040, creating an unsustainable health care and financial burden.
