Public and Healthcare Provider Receptivity toward the Retention of Dried Blood Spot Cards and Their Usage for Extended Genetic Testing in Hong Kong
Abstract
:1. Introduction
2. Materials and Methods
2.1. Sampling and Recruitment
2.2. Survey Measures
- (1)
- The source of information, which is evaluated by assessing various sources of knowledge, such as discussions with healthcare professionals, media, leaflets, colleagues, and online forums.
- (2)
- Knowledge about the potential benefits of storing a DBS card is assessed by presenting participants with 11 true or false statements. These statements have been developed based on a thorough review of the NBS literature and position statements. A higher score indicates a better understanding of the advantages of storing a DBS card.
- (3)
- Attitudes toward DBS card storage are assessed by examining concerns relating to privacy breaches, data sharing among institutions, linking research information to medical records, lack of immediate individual benefits, and serving secondary research purposes. Each item is rated on a 5-point Likert scale, ranging from 0 (not concerned at all) to 5 (extremely concerned).
- (4)
- Practices are assessed by evaluating participants’ interest in storing their child’s sample after the NBS on a 1-to-10 Likert scale (1 indicating not supportive, and 10 indicating extremely supportive). Additionally, participants are asked how long they believe the DBS card should be stored.
2.3. Data Analysis
3. Results
3.1. Demographics Characteristics
3.2. Awareness of Newborn Screening for Uncommon Disorders
3.3. Knowledge about the Potential Benefits of Storing Dried Blood Spot Cards
3.4. Concerns and Views about Storing Dried Blood Spot Cards
3.5. Interest in Opting for Extended Genetic Testing
4. Discussion
5. Conclusions
6. Strengths and Limitations
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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All | Healthcare Providers | Parents | Chi/t | p-Value | |
---|---|---|---|---|---|
(n = 559) | (n = 107) | (n = 452) | |||
n (%) | n (%) | n (%) | |||
Age | |||||
mean (SD) | 36.8 (6.57) | 39.39 (10.33) | 36.17 (5.18) | 3.06 | <0.001 |
Gender | ns | ns | |||
Female | 412 (73.7%) | 76 (71%) | 336 (74.3%) | ||
Male | 147 (26.3%) | 31 (29%) | 116 (25.7%) | ||
Ethnicity | 15.6 | <0.001 | |||
Hong Kong Chinese | 500 (89.5%) | 107 (100%) | 393 (86.9%) | ||
Mainland Chinese | 32 (5.7%) | - | 32 (7.1%) | ||
Other | 27 (4.8%) | - | 27 (6%) | ||
Religion | 31.25 | <0.001 | |||
None | 370 (66.2%) | 52 (48.6%) | 318 (70.4%) | ||
Christian | 111 (19.8%) | 39 (36.4%) | 72 (15.9%) | ||
Catholic | 39 (7.1%) | 12 (11.2%) | 27 (6%) | ||
Buddhist | 26 (4.6%) | 4 (3.8%) | 22 (4.8%) | ||
Other | 13 (2.3%) | - | 13 (2.9%) | ||
Do you work in a health-care related field? | |||||
No | - | - | 409 (90.5%) | - | - |
Yes | - | - | 43 (9.5%) | - | - |
Profession | |||||
Doctor | - | 34 (31.8%) | - | - | - |
Nurse | - | 36 (33.6%) | - | - | - |
Laboratory Technician | - | 5 (4.7%) | - | - | - |
Others | - | 32 (29.9%) | - | - | - |
Years of Experience in NBS | - | - | |||
Mean (SD) | - | 5.49 (7.35) | - | ||
Highest Education | 118.7 | <0.001 | |||
Upper Secondary or lower | 174 (31.1%) | 2 (1.9%) | 172 (38.0%) | ||
Post-Secondary | 78 (14.0%) | 3 (2.8%) | 75 (16.6%) | ||
Tertiary | 197 (35.2%) | 47 (43.9%) | 150 (33.2%) | ||
Master or above | 110 (19.7%) | 55 (51.4%) | 55 (12.2%) | ||
Family Income | 89.55 | <0.001 | |||
Below HKD 19,999 | 93 (16.7%) | 3 (2.8%) | 90 (19.9%) | ||
HKD 20,000–29,999 | 81 (14.5%) | 1 (0.9%) | 80 (17.7%) | ||
HKD 30,000–39,999 | 89 (15.9%) | 6 (5.6%) | 83 (18.4%) | ||
HKD 40,000–49,999 | 37 (6.6%) | 4 (3.7%) | 33 (7.3%) | ||
Above HKD 50,000 | 259 (46.3%) | 93 (87.0%) | 166 (36.7%) | ||
Consanguinity | |||||
No | - | - | 424 (93.8%) | - | - |
Yes | - | - | 24 (5.3%) | - | - |
Not Sure | - | - | 4 (0.9%) | - | - |
Kid Number | |||||
1 | - | - | 198 (43.8%) | - | - |
2 | - | - | 202 (44.7%) | - | - |
3 or above | - | - | 52 (11.5%) | - | - |
Diagnosed Disease | |||||
None | - | - | 291 (64.4%) | - | - |
Cardiac Diseases | - | - | 40 (8.8%) | - | - |
Haematology | - | - | 21 (4.7%) | - | - |
Respiratory | - | - | 16 (3.5%) | - | - |
Neonatology | - | - | 15 (3.3%) | - | - |
Endocrine Diseases | - | - | 14 (3.1%) | - | - |
Neurology | - | - | 9 (2.0%) | - | - |
Metabolic Diseases | - | - | 8 (1.8%) | - | - |
Others | - | - | 38 (8.4%) | - | - |
All | Healthcare Providers | Parents | Chi/t | p-Value | |
---|---|---|---|---|---|
(n = 559) | (n = 107) | (n = 452) | |||
n (%) | n (%) | n (%) | |||
How long do you think DBS should be stored? | |||||
Up to 6 months | 155 (27.7%) | 29 (27.2%) | 126 (27.9%) | ns | ns |
Up to 2 years | 118 (21.1%) | 23 (21.5%) | 95 (21%) | ns | ns |
Up to 5 years | 89 (15.9%) | 24 (22.4%) | 65 (14.4%) | ns | ns |
Up to 18 years | 100 (17.9%) | 21 (19.6%) | 79 (17.5%) | ns | ns |
Indefinitely | 97 (17.4%) | 10 (9.3%) | 87 (19.2%) | ns | ns |
Do you support DBS storage? (1 as not interested at all; 10 as extremely interested) | |||||
mean (SD) | 8.15 (1.66) | 8.26 (1.70) | 8.13 (1.65) | ns | ns |
All | Healthcare Providers | Parents | Chi | p-Value | |
---|---|---|---|---|---|
(n = 559) | (n = 107) | (n = 452) | |||
n (%) | n (%) | n (%) | |||
If you were the parent, would you wish to receive the following information with regard to your child/If you were a healthcare provider, would you wish to disclose the following information to parents? | |||||
A childhood-onset disorder is a condition with treatment | 492 (88.0%) | 97 (90.7%) | 395 (87.4%) | ns | ns |
A condition list on the current medical recommended screening panel | 481 (86.0%) | 94 (87.9%) | 387 (85.6%) | ns | ns |
Increase risk for an adult-onset disease | 467 (83.5%) | 83 (77.6%) | 384 (85.0%) | ns | ns |
The newborn is a carrier for the condition but will not develop it | 470 (84.1%) | 93 (86.9%) | 377 (83.4%) | ns | ns |
An adulthood-onset disorder is a condition with treatment | 466 (83.4%) | 94 (87.9%) | 372 (82.3%) | ns | ns |
A childhood-onset disorder is a condition with NO available treatment | 456 (81.6%) | 91 (85.0%) | 365 (80.8%) | ns | ns |
A variant that has unknown clinical implications | 413 (73.9%) | 61 (57.0%) | 352 (77.9%) | 19.5 | <0.001 |
An adulthood-onset disorder is a condition with NO available treatment | 421 (75.3%) | 81 (75.7%) | 340 (75.2%) | ns | ns |
What is the factor(s) impacting your interest in extended genetic testing? (1 is not important at all; 5 is extremely important) | |||||
mean (SD) | mean (SD) | mean (SD) | t | p-value | |
Shorten the diagnosis time in future | 3.69 (1.17) | 4.20 (0.884) | 3.57 (1.19) | 6.11 | <0.001 |
Identify new disease genes and diagnose individuals with rare disorders | 3.66 (1.16) | 4.14 (0.976) | 3.54 (1.17) | 5.45 | <0.001 |
Access to existing treatment for affected individuals | 3.68 (1.15) | 4.31 (0.862) | 3.53 (1.16) | 7.84 | <0.001 |
Accuracy of the test results/sequencing results | 3.67 (1.19) | 4.32 (0.938) | 3.52 (1.20) | 7.52 | <0.001 |
Access to specialist follow-up for affected individuals | 3.64 (1.15) | 4.18 (0.92) | 3.51 (1.17) | 6.38 | <0.001 |
Impinge on the child’s right to an open future | 3.58 (1.19) | 4.06 (0.96) | 3.47 (1.21) | 5.37 | <0.001 |
Diagnosing susceptibility to adult-onset disease during the newborn period | 3.35 (1.18) | 3.45 (1.27) | 3.32 (1.16) | ns | ns |
How interested would you be in obtaining your child’s extended genetic testing? (1 as not interested at all; 10 as extremely interested) | |||||
mean (SD) | 7.83 (1.85) | 7.64 (1.87) | 7.87 (1.85) | ns | ns |
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Share and Cite
Belaramani, K.M.; Fung, C.W.; Kwok, A.M.K.; Lee, S.Y.R.; Yau, E.K.C.; Luk, H.M.; Mak, C.M.; Yeung, M.C.W.; Ngan, O.M.Y. Public and Healthcare Provider Receptivity toward the Retention of Dried Blood Spot Cards and Their Usage for Extended Genetic Testing in Hong Kong. Int. J. Neonatal Screen. 2023, 9, 45. https://doi.org/10.3390/ijns9030045
Belaramani KM, Fung CW, Kwok AMK, Lee SYR, Yau EKC, Luk HM, Mak CM, Yeung MCW, Ngan OMY. Public and Healthcare Provider Receptivity toward the Retention of Dried Blood Spot Cards and Their Usage for Extended Genetic Testing in Hong Kong. International Journal of Neonatal Screening. 2023; 9(3):45. https://doi.org/10.3390/ijns9030045
Chicago/Turabian StyleBelaramani, Kiran Moti, Cheuk Wing Fung, Anne Mei Kwun Kwok, Shing Yan Robert Lee, Eric Kin Cheong Yau, Ho Ming Luk, Chloe Miu Mak, Matthew Chun Wing Yeung, and Olivia Miu Yung Ngan. 2023. "Public and Healthcare Provider Receptivity toward the Retention of Dried Blood Spot Cards and Their Usage for Extended Genetic Testing in Hong Kong" International Journal of Neonatal Screening 9, no. 3: 45. https://doi.org/10.3390/ijns9030045