Home Parenteral Nutrition: Malaysian Perspectives and a Localised Checklist

ABSTRACT

Chronic intestinal failure (CIF) is a rare condition requiring home parenteral nutrition (HPN) for long-term survival. Since its introduction in Malaysia in 1994, HPN has faced significant challenges compared to established programs globally, including limited healthcare infrastructure, a lack of coordinated community care, and insufficient training and emergency management protocols. This paper examined the differences and identified the gaps between global and Malaysian HPN practices. Using ESPEN and ASPEN guidelines as references, we propose a tailored checklist to bridge these gaps. The checklist aims to optimise HPN management in Malaysia, improve patient outcomes, and promote equitable access to HPN care.

INTRODUCTION

Chronic intestinal failure (CIF) is a rare organ failure characterised by reduced gut function below the minimum necessary for macronutrients absorption, which necessitates intravenous supplementation such as parenteral nutrition (PN) to maintain health and support growth [1]. Home parenteral nutrition (HPN) was first introduced in 1970 as a treatment modality for benign CIF and has since been widely adopted globally [1].

In Malaysia, HPN was first reported in 1994 for managing patients with short bowel syndrome, a major cause of CIF [2]. HPN is a life-saving therapy for CIF patients with both benign or malignant disease, which serves as palliative nutrition for patients with incurable malignant disease or as medical nutrition for patients who decline the oral or enteral route despite having a functioning gut [3]. While HPN provides a lifeline and enables patients to live and function outside hospital settings, complications are common and can be associated with significant morbidity and mortality [4].

HPN-related complications include venous access-related complications such as infections and thrombosis, as well as metabolic complications such as renal, hepatic, and bone disorders [5]. Due to its complexity, the safe and effective provision of HPN requires a dedicated nutrition support team (NST), typically involving physicians specialising in surgery and gastroenterology, nurses, dietitians, and pharmacists [3].

The operationalisation and implementation of HPN programs vary significantly between global practices and localised adaptations, such as those observed in Malaysia [6]. The differences include variability among HPN providers, including gaps in staff competency and expertise; patient-related factors, like socioeconomic variables; environmental challenges, such as rural and geographical disparities; and regulatory considerations, including cost constraints and facility requirements [5]. This case study examined the differences and identifies gaps and challenges in the local HPN program, with the aim of facilitating more equitable access to long-term PN care (Table I).

CASE PRESENTATION  

Differences between global and local HPN practices

The structure and financial support of HPN differ markedly between Malaysia and other countries with established HPN programs. For example, in the United Kingdom, the National Health Service funds HPN programs and contracts home care providers, while in the United States, private insurance companies cover most costs through partnerships with home care agencies [5][7][8]. In Malaysia, HPN programs are primarily hospital-driven, with the government subsidising public healthcare and covering PN costs. Patients, however, are responsible for expenses related to equipment, ancillaries, and private home care services, often depending on additional funding from charitable organisations[2][9]. This financial burden highlights the need for a more integrated and sustainable HPN model in Malaysia.

Content	Countries with established HPN Programs	Current Practices in Malaysia
Structure and involvement of community health services	Standardized and protocol-driven, involving multiple groups of healthcare practitioners, with strong integration between hospital and community health services [3][6].	Hospital-driven, heavily reliant on hospital resources, limited community health involvement, and less comprehensive support networks.
Financial support	The National Health Service or patients’ healthcare insurance policy totally or partially covers costs [7][8].	The Ministry of Health and patients share the costs, and financial assistance from non-profit organizations is often needed.
PN admixture, equipment, and supplies delivery	Coordinated between hospitals, pharmacies, and home care providers. The PN admixture, equipment, and ancillaries are delivered directly to patients’ homes [3][6].	Hospital pharmacies supply PN admixtures, whereas patients purchase equipment and ancillaries independently.
Education, training, and monitoring	Conducted by hospitals or home care providers at the hospital or the patients’ homes, with hands-on exercises, written handouts, and digital tools [3][4].	Training primarily occurs within hospitals, with fewer resources like digital tools or detailed take-home materials.
Emergency and complications management	Written protocols for the emergency management of HPN-related complications like central line-associated bloodstream infection (CLABSI), are often available and accessible [3][4].	Emergency protocols for managing HPN complications are less formalized, which can delay timely interventions in critical situations such as CLABSI.

The proposed checklist explicitly acknowledges the existing cost-sharing realities of HPN in Malaysia and provides a structured approach to managing them. While the Ministry of Health subsidises PN admixtures, patients often incur additional costs for infusion devices, ancillaries, and related services, necessitating support from non-governmental organisations or other funding sources. By systematically assessing the HPN program payer, the checklist is designed to facilitate early identification of funding gaps, support applications for external financial assistance, and inform

policy-level discussions aimed at reducing the patient cost burden. This proactive approach is essential for promoting equitable access and improving the long-term sustainability of HPN services.

In countries with established HPN programs, home care providers offer comprehensive services, including the direct delivery of PN admixtures and ancillaries to patients’ homes through certified transport services, ensuring uninterrupted access to essential materials [6]. Malaysia has not yet established private home care services and delivery systems. Therefore, patients and caregivers are responsible for sourcing the necessary items [2].

Patients in rural areas may encounter additional challenges in accessing technical support for device troubleshooting and maintenance. Unlike countries with established HPN models that provide coordinated home delivery of PN admixtures and ancillaries, Malaysia lacks an organised private home care delivery system, requiring patients and caregivers to independently source equipment and consumables. This involves ensuring continuity of supply, transportation, and appropriate storage of PN-related items. These logistical constraints increase the risk of therapy interruption and underscore the need for a systematic assessment of home environment readiness and procurement feasibility before HPN initiation.

Notably, training, monitoring, and emergency management of HPN programs varied across different regions. From a global perspective, established HPN training is comprehensive and often conducted at hospitals or patients’ homes, supplemented with hands-on exercises, written handouts, and digital tools. Emergency management protocols for complications like catheter-related bloodstream infections are often readily accessible [3]. In Malaysia, healthcare providers primarily conduct HPN training and manage HPN-related complications based on local hospital policies [2]. Considering this, there is a need to standardise training programs and establish comprehensive emergency management protocols to improve patient preparedness and safety in the Malaysian HPN program.

The Malaysian version of HPN checklist

Given the aforementioned differences and gaps, international guidelines and checklists from the European Society for Clinical Nutrition and Metabolism (ESPEN) and the American Society for Parenteral and Enteral Nutrition (ASPEN) may not adequately account for regional variability in healthcare infrastructure, resource constraints, patient demographics, and cultural differences in Malaysia [3][10]. Hence, it is crucial to develop a tailored checklist incorporating local standards to provide guidance relevant to the local healthcare system. The Malaysian HPN checklist was developed through a structured narrative synthesis of international HPN guidelines and operational recommendations, primarily drawing from ESPEN and ASPEN guidance, as well as previously published HPN checklists and implementation frameworks [3][10]. Key domains were identified and adapted to reflect the Malaysian healthcare context, taking into account local infrastructure limitations, financing mechanisms, workforce capacity, and patient-related factors.

To address this, we developed a structured checklist for HPN in Malaysia by adopting checklists from Pironi et al. and Worthington et al. [6][10]. The draft checklist was iteratively refined based on the NST’s multidisciplinary clinical experience in HPN practice and reviewed by clinicians and pharmacists involved in nutrition support services, with the aim of producing a practical, context-specific framework rather than a prescriptive guideline. The checklist has four main sections, including a structured framework to confirm the clinical indication for HPN, assess its feasibility, implement necessary procedures, and ensure long-term strategies for training, monitoring, and emergency response (Table II).

The checklist begins with the most fundamental step: determining the indication of HPN based on appropriate clinical scenarios and identifying patients who might benefit from this therapy, followed by obtaining their informed consent [6]. This section underlines the importance of a detailed discussion between healthcare providers and patients, especially regarding the goals of HPN, benefits, risks, possible complications, treatment limitations, and financial implications [3]. For instance, in patients with incurable malignant diseases undergoing palliative care, the checklist prompts the healthcare providers to consider the potential futility of the intervention and its impact on the patient’s quality of life [10]. Meanwhile, obtaining informed consent is gaining prominence in Malaysian healthcare, where healthcare professionals engage patients in decision-making, empowering them to manage their chronic diseases actively [11].

The second section addresses the feasibility of HPN, evaluating both patient factors and the suitability of the patient’s home environments to manage the demands of this therapy. Key factors like patients’ metabolic and clinical stability, capability, and willingness to undergo training are crucial in determining HPN feasibility [3][10]. The patients’ home conditions, including the availability of electricity, refrigeration, and clean preparation spaces, must be considered [2]. Since living conditions can vary significantly in Malaysia, the emphasis on a conducive home environment is particularly relevant [12]. This checklist enables healthcare professionals to systematically assess the risks associated with administering HPN outside of a clinical setting to prevent potential complications, maximise quality of life, and promote a safer model of care.

The third section outlines the procedures for implementing HPN, encompassing the choice and placement of central venous access devices (CVAD), infusion control device selection, and PN prescription [3]. Selecting the most suitable CVAD and infusion control device in the Malaysian setting depends on local resource availability and patient-specific factors. Prescribing PN involves decisions on nutrient composition and infusion frequency, where pharmacists play a central role in verifying the compatibility and stability of customised PN formulations, ensuring appropriate micronutrient supplementation, and aligning prescriptions with clinical requirements. As Malaysia has not yet established a system for direct home delivery of PN admixtures and ancillaries, the checklist also supports pharmacists and other healthcare providers in coordinating planned PN collection from hospital pharmacies, advising on storage and handling, and guiding patients in securing necessary ancillary supplies to ensure continuity and safety of HPN therapy.

Finally, the fourth section of the checklist emphasises the need for standardised training, structured monitoring, and formalised emergency management for HPN in Malaysia. At present, HPN training is largely hospital-based and varies across centres, with limited use of structured educational materials, digital tools, and written emergency protocols [3]. The proposed framework seeks to address this gap by outlining core training components including hands-on exercises, prompt decision-makingimely escalation of care, thereby written materials, videos, and digital tools, while highlighting the importance of tailoring education to patients’ health literacy levels and cultural backgrounds within Malaysia’s diverse population. Given that delayed recognition and management of catheter-related bloodstream infections remain a key safety concern in settings with less formalised emergency pathways, the checklist emphasized on the availability of clear, written emergency protocols to support prompt decision-making and timely escalation of care, thereby promoting safer and more consistent HPN delivery across settings.

STEP 1 Confirming the indication for HPN and obtaining the patient’s informed consent
Items	Points (✓ when met)
Clinical scenario and goals of treatment	Indication of HPN Chronic intestinal failure (CIF) due to benign diseasesCancer patients on curative therapy Cancer patients on palliative care (Consider the risk of deterioration or futile treatment if life expectancy is short)Insufficient oral feeding, refusal / aversion / intolerance of enteral nutrition (absence of confirmed mechanism of CIF) (Consider HPN only in life-threatening situations and for a time-limited period, given its inherent risks) Underlying disease-causing CIFCrohn’s diseaseMesenteric ischemiaSurgical-related complications Chronic intestinal pseudo-obstruction Radiation enteritis Description of the GI anatomy and function Mechanism of CIF Short bowel syndromeIntestinal dysmotilityEnterocutaneous fistula Intestinal obstructionExtensive intestinal mucosal diseaseExpected duration Short term / transient (<6 months) Long-term / permanent (>6 months)Goals of the HPN program Total (exclusive) PN or supplemental (partial or complementary) PN Maintenance of the current nutritional status or treatment of malnutrition
Patient / caregiver’s information	Patient / caregiver informed on:Need of HPNProcedures GoalsBenefitsRisks ComplicationsTreatment limitations Financial implications
Patient’s informed consent	Patient signed informed consent document (according to specific rules of the hospital)
STEP 2 Assessing HPN feasibility
Items	Points (✓ when met)
Patient metabolic and clinical stability	Stable intravenous supplementation requirementsStable and normal vital parameters (blood pressure, heart rate, body temperature)Stable and normal hydration, electrolyte, and acid-base balancesStable renal functionStable liver functionStable and compensated glycaemic metabolismStable underlying diseaseStable comorbidities and manageable care for stomas, drains, wounds, and othersPsychological state under controlC-reactive protein normal or stable with a known causeBody weight, height, and body composition assessedMicronutrient status assessed (if applicable)
Patient/caregiver ability to manage HPN	Person to be trained for HPN managementPatientCaregiverPatient and/or caregiver’s cognitive function to self-manage HPNLanguageLiteracy skillsMemory Patient and/or caregiver’s physical function to self-manage HPNDexterityVisual acuityHearing

Table II: Detailed checklist for HPN in Malaysia (continued).

STEP 2 Assessing HPN feasibility
Adequacy of patient’s home environment	Geographic locationCleanlinessVentilationBasic home safetyElectricityRunning waterPhone lineInternet accessFridge for PN bag storageCooler box for transportation of PN bag Adequate zone for safe HPN procedure handlingDesignated table/area for procedure handling with easy-to-clean surfaceStorage area for ancillaries Presence of pets (specify………….)
HPN program payer	Ministry of Health (MOH)PatientNon-government organisations (NGO) Individual items of the HPN program PN admixtures (MOH)Infusion control device (Patient / NGO)Materials and ancillaries (Patient / NGO) Sterile gauze or sterile and/or transparent, semipermeable CVAD dressingNon-sterile glovesSterile glovesAlcohol-based solution for hand decontaminationNeedle-free connectorAntiseptic barrier cap Disposable dressing setAlcohol swabLine flushing setSodium chloride 0.9% Infusing tubingInfusion filterContainers for waste collection
STEP 3 Implementing necessary HPN procedures
Items	Points (✓ when met)
Central venous access device (CVAD) choice	Choice of the CVAD Evaluation of access options (vascular condition and patency)Suitability of CVAD for patient/caregiver (hand / visual function; fear of puncturing; body image; occupation / hobbies / patient’s experience with previous CVADs)Availability of resources CVAD information Type of CVAD Number of lumens Vein of insertion Date of insertion Tip location
Infusion control device	Choice of infusion pumpStationary infusion pump Portable infusion pump and backpack (if needed)Written instruction on pump handling / care / malfunction Service for (acute) problems and pump maintenance
Prescription of PN admixture and any additional intravenous (IV) fluids, electrolytes and drugs	Type of PN admixtureCommercial ready-to-useCustomized – pharmacy produced with pharmacist approval of the compatibility and stability of the prescribed PN formulaMultivitamins and multi-trace element vialsAdditional IV supplementation (fluids / electrolytes)Additional IV drugs
PN infusion modality	Information on multivitamin and multi-trace element vials added to the PN bag before infusion (and insulin if needed)Days of infusion per weekVolume, duration, and speed of infusion (hours)
Obtaining PN admixture and ancillaries	Planned daytimes to collect the PN admixture from hospital pharmaciesMethods to purchase or obtain ancillaries

STEP 3 Implementing necessary HPN procedures
Patient travelling (when applicable)	Patient’s clinical and metabolic stability and clinical conditionAddress and suitability of location at destinationSupport available at destinationType of transportationDuration of travel
STEP 4 HPN training, monitoring, and emergency management
Items	Points (✓ when met)
Patient/caregiver training for CVAD and infusion line care and management	Personnel involved in training provision Aims of training Hand hygieneGloving techniqueProper storage and handling of supplies and PN admixturePN preparation:  Sterile field preparationAseptic technique AdditivesInfusion line management Skin antisepsis and scrubbing the hub connectorsTiming of infusion set replacementTiming of changing needleless connectorsInfusion pump managementCVAD managementDressing change (if applicable)FlushingAseptic hub care (‘scrub the hub”)Antimicrobial lock (antibiotic or ethanol, if applicable)Recognition of complications and related actionsTools for trainingHands-on exercisesHand-out materialsVideosDigital toolsWritten protocols Training schedule and monitoring of progress Schedule of the training program and monitoring of the evolution of learningDuration of training Instructions for special conditions Written information to avoid blood sample drawing from the CVAD, unless an exception is providedWritten information to avoid contrast medium infusion, unless an exception is provided
Training for routine self-monitoring and emergency care	Written instructions on how to recognise dehydration / fluid retention, and central venous catheter-related complicationsWritten instructions and templates for vital signs, body weight, fluid balance, oral feeding, or daily food recording
Scheduled clinical monitoring of HPN program	Program of scheduled visitsWritten information on the clinical parameters, biochemical, and instrumental investigations to be performed at each scheduled visit
Emergency management	Written information for patient and caregiver on signs / symptoms that require emergency contact with the NST and/or to go to hospital emergency department Written recommendations on how to diagnose and treat central line-associated bloodstream infections

This perspective has several limitations. The proposed checklist has not undergone formal clinical validation, nor has its impact on patient outcomes, safety, or health service utilisation been assessed. Future research should include pilot implementation studies, evaluation of clinical and patient-reported outcomes, and assessment of feasibility across different healthcare settings to inform refinement and broader adoption of the checklist.

CONCLUSION

In conclusion, identifying context-specific gaps in HPN delivery allows healthcare providers to better address the challenges faced within the Malaysian healthcare system. The proposed localised checklist offers a practical, step-by-step framework to support more consistent care and improve access to HPN services. Its effective implementation depends on coordinated multidisciplinary collaboration among physicians, nurses, dietitians, and pharmacists across clinical decision-making, patient education, and monitoring. Future efforts to strengthen HPN services should focus on policy review, standardised training, improved emergency management, and enhanced community-based support to optimise patient outcomes.

CONFLICT OF INTEREST

The authors declare no conflict of interest.

ACKNOWLEDGEMENT

We would like to thank the Director General of Health Malaysia for his permission to publish this article. We also extend our gratitude to Mr Mohana Raj Thanapal, Consultant General and Colorectal Surgeon from the General Surgery Department at Hospital Kuala Lumpur; Mr Ammar Ahmad, Surgeon from the General Surgery Department at Hospital Kuala Lumpur; and Dr Zulfitri Md Hassan, Medical Officer from the Paediatric Surgery Department at Hospital Tunku Azizah, for reviewing the content of this article.

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