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Abstract
Parents of children receiving palliative care (PPC) may turn to traditional, complementary and integrative medicines (TCIM); however, related studies are limited. This study examined the pattern of TCIM use in this population. Sixty-one parents in Hong Kong were recruited and surveyed. Over half (42/61) reported TCIM use, most commonly Chinese herbal medicine and massage/TuiNa. The most common reason for not using TCIM was the lack of information (11/19). In general, parents had expressed interests in TCIM. Policy makers should consider multidisciplinary and collaborative integration of TCIM in routine PPC.
- Palliative Care
Data availability statement
Data are available on reasonable request.
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Introduction
Paediatric palliative care (PPC) requires attention to the unique physical, developmental and psychosocial needs of children. As such, parents may turn to traditional, complementary and integrative medicine (TCIM), as there are often limited conventional therapies with a curative intent. Three small studies in Canada, Germany and Australia have reported TCIM use in 29%–43% of children with cancer undergoing PPC.1–3 Currently, there are no data on the use of TCIM in PPC in Hong Kong. Moreover, most existing data are from adult patients and are mostly limited to oncology. This study explored the use of TCIM by paediatric patients receiving PPC in Hong Kong.
Methods
Between April 2021 and July 2022, the parents of patients (<19 years old) receiving PPC were recruited from three public hospitals in Hong Kong through consecutive sampling. Investigators obtained a list of patients who were due for follow-up consultations during the study period and the parents of eligible patients were contacted. The parents completed a structured survey to report their demographic, socioeconomic and lifestyle characteristics. The patients’ clinical data were collected from their electronic health records. The parents also completed the validated International Questionnaire to Measure Use of Complementary and Complementary medicine.4 The Traditional Chinese version of the Rotterdam Symptoms Checklist was used to assess patients’ symptom burden.5 An open-ended question on the integration of TCIM into existing PPC services was included at the end of the survey.
Results
A total of 64 parents of patients receiving PPC were approached and 61 of them (age range=1–18 years) were recruited (response rate 95.3%). Overall, 68.9% (n=42/61) reported the use of TCIM, including 15/24 patients with cancer and 27/37 patients without cancer. The children who used TCIM (Mean(SD) raw score:8.2 (3.1) out of 24 points) had lower parent-rated psychological symptom burden than non-users (Mean(SD) raw score:10.1 (5.1) out of 24 points).
The most common TCIM modalities were Chinese herbal medicine (n=28/61) and massage/Tuina (n=21/61) (table 1). Vitamins (n=9) and fish oil (n=8) were the most popular supplements. Non-oral (psychological and physical) approaches, especially acupuncture, were less popular among patients with cancer (n=7/24) than among non-cancer patients (n=24/37). Massage with or without essential oils was frequently used to relax muscles and tendons of children.
Pattern of use of traditional, complementary and integrative medicine
More than half of the parents (n=23/42) spent ≥HKD1000 (US$130) on TCIM each month. Most TCIM users obtained information from their friends or family members (n=30/42) rather than from healthcare professionals (n=13/42). The most common reasons for using TCIM were to improve general health or immunity (n=30/42) and address chronic symptoms (n=26/42). The most common reason for not using TCIM was a lack of information (n=11/19).
Most parents (n=34/41) supported the integration of TCIM, especially Chinese herbal medicine, acupuncture and massage/Tuina, into existing PPC services.
Discussion
More than two-thirds of the surveyed parents reported the use of TCIM by their children undergoing PPC, suggesting that this special population requires other options in addition to conventional medicines to manage symptoms and improve quality of life. Our descriptive results suggested differences in the patterns of TCIM use between cancer and non-cancer patients, warranting further investigations to advise targeted recommendations to address their different needs.
To a large extent, parents support the integration of TCIM into existing PPC services. This preliminary data may serve as the basis for the integration of TCIM in PPC in Hong Kong and potentially in other Asian settings. For example, multidisciplinary consultation with both primary physicians and TCIM service providers may help to improve communication with patients. A referral pathway may be designed for physicians to refer patients to their preferred types of TCIM practitioners. Such an interdisciplinary team should also formulate a holistic care plan that is aligned with the treatment goals, to ensure the safety and efficacy of integrative treatment. From a policy perspective, measures to minimise the cost of TCIM consultation within hospitals and the provision of home services for disabled patients should be considered when integrating TCIM services into PPC programmes.
Data availability statement
Data are available on reasonable request.
Ethics statements
Patient consent for publication
Ethics approval
The study was approved by the research ethics committees of the study sites (Kowloon West Cluster - KW/EX-21-074(159-02), New Territories West - NTWC/REC/21025, Hong Kong Children’s Hospital - HKCH-REC-2020-074). Participants gave informed consent to participate in the study before taking part.
Acknowledgments
We would like to thank the Children's Palliative Care Foundation for their efforts in contacting and recruiting participants.
Footnotes
Presented at A portion of the results was presented at the European Society for Medical Oncology (ESMO)- Asia Congress in Singapore on December 3, 2022, and was given the "Best Poster Award (Palliative Care Caetgory)".
Contributors All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by CSL, TYHL, SSM, YTC. The first draft of the manuscript was written by CSL and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Patient and public involvement statement Patients and the public were not involved in the design, or conduct, or reporting, or dissemination plans of the research.
Provenance and peer review Not commissioned; externally peer reviewed.