Study: How Young People With Huntington’s Risk Seek Information

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Most young people at risk of developing Huntington’s disease are not given information about the disorder at the time they’re told about the risk and end up seeking it on their own online, according to a new study.

“This study is the first to take an in-depth look at both how young people learn about [Huntington’s] in their family and subsequently seek information. Results provide insight about approaches to and motivations for information-seeking,” researchers wrote.

The study, Searching for Answers: Information-Seeking by Young People At-Risk for Huntington’s Disease,” was published in the Journal of Huntington’s Disease. 

Huntington’s disease (HD) is caused by genetic mutations present from birth, but the disease usually doesn’t manifest until a person is in their 40s or 50s. A team led by scientists at the University of Michigan surveyed young people at risk of Huntington’s due to a family history of the disease and was specifically interested in whether and how young people sought out information about it that might come to affect them.

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“Few studies to date have examined the process of information-seeking in young people at-risk for HD,” the researchers wrote. “This study aimed to characterize information-seeking practices including motivations, timing, and sources used by young people who grew up at-risk for HD as well as expand understanding of the information needs of this population.”

The survey was completed by 42 young people (ages 15 to 25) at risk of Huntington’s, and eight additional participants completed at least part of the survey. Among respondents with available data, the average age was 22.2, 88.1% identified as female, and 78.6% had some college education.

Nearly all the participants — 92% — had a biological parent who had been diagnosed with manifest Huntington’s disease, while the rest had a biological parent who was known to carry a Huntington-causing mutation, but hadn’t yet displayed overt symptoms.

Most of the participants (78%) recalled becoming aware of their family history of Huntington’s before age 15, and about half (52%) recalled being aware by age 12. Most were initially informed about the disease by a family member, or learned about it when someone in their family was formally diagnosed.

The majority of participants recalled that, when they were growing up, the family history of Huntington’s either was  “kept a secret in [their] family” (35.4%) or was “talked about but difficult to bring up” (43.8%). Fewer than one in four (20.8%) said Huntington’s was openly talked about in their family.

These findings “highlights gaps in communication about information related to HD in families,” the researchers wrote. “Generally, HD was either kept a secret or a difficult topic to bring up in a family.”

Of 28 participants who had specific memories about the first time they learned of Huntington’s, only two (7.1%) remembered being given informational resources. Among those who learned of Huntington’s at age 12 or older, half remembered seeking out additional information soon thereafter.

Most (72.3%) said they looked primarily for information on their own, while just 6.4% were given information before they asked for it. Participants mainly sought information online, with Huntington’s support organizations, general online searches, and social media being the most common sources.

While most (62.2%) asked their parent(s) for more information about Huntington’s, markedly fewer (37.8%) sought information from a healthcare provider.

“While a plethora of medical information is currently available online, the process of identifying and evaluating reliable information can be challenging. … Lack of direction to reliable resources may result in a young person being under- or mis-informed which could exacerbate the challenge of coping with personal risk for HD,” the researchers wrote.

“Healthcare providers’ awareness of information needs and available resources is important to ensure that young people are provided with accurate information and are supported in adapting to their risk status and familial diagnosis of HD,” they said.

The specific information sought by participants was mostly related to clinical features and inheritance of Huntington’s — for example, the disease’s symptoms, individual risk, expected lifespan, and how to get genetic testing. Reasons for seeking information were mostly related to wanting to understand how the disease was likely to affect their life and family.

Only a few participants (16.3%) said they had questions for which they had been unable to find answers. “These questions included scientific concepts about HD (risk related to intermediate alleles, anticipation, etc.), how to cope or find appropriate support, and how to secure life insurance prior to genetic testing,” the researchers wrote.