Dataset Information

Results from an online survey of adults with cystic fibrosis: Accessing and using life expectancy information.

ABSTRACT: Cystic fibrosis (CF) is the one of the most common inherited diseases. It affects around 10,000 people in the UK, and the median survival age is 47. Recent developments making use of longitudinal patient registry data are producing more detailed and relevant information about predicted life expectancy in CF based on current age and clinical measurements. The objective of this study was toconduct an online survey of adults with CF living in the UK using a web-based questionnaire to investigate: (i) if and how they access information on life expectancy; (ii) what they use it for; (iii) if they want more personalised information on life expectancy or the time until other milestones. The survey was advertised through the Cystic Fibrosis Trust using social media. There were 85 respondents, covering men (39%) and women (61%) aged 16-65. 75% had received information on life expectancy either from their CF care team (34%) or other sources (71%), the most common being the Cystic Fibrosis Trust website and research literature. Most people who received information found it to be beneficial and reported using it in a variety of ways, including to plan strategies for maintaining as best health as possible and to psychologically manage current health status. 82% of respondents were interested in more personalised information about their life expectancy, and participants also noted interest in other outcomes, including time to needing transplant or reaching a low level of lung function. Themes arising in text responses included the importance of good communication of information, the difficulty of relating general information to one's own circumstances, and a desire for increased information on factors that impact on survival in CF. As an outcome from this work, research is underway to establish how information on life expectancy can be presented to people with CF in an accessible way.

SUBMITTER: Keogh RH

PROVIDER: S-EPMC6461271 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Results from an online survey of adults with cystic fibrosis: Accessing and using life expectancy information.

Keogh Ruth H RH Bilton Diana D Cosgriff Rebecca R Kavanagh Dominic D Rayner Oliver O Sedgwick Philip M PM

PloS one 20190412 4

Cystic fibrosis (CF) is the one of the most common inherited diseases. It affects around 10,000 people in the UK, and the median survival age is 47. Recent developments making use of longitudinal patient registry data are producing more detailed and relevant information about predicted life expectancy in CF based on current age and clinical measurements. The objective of this study was toconduct an online survey of adults with CF living in the UK using a web-based questionnaire to investigate: ( ...[more]

PMID: 30978192

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Project description:BACKGROUND:Over the last two decades, lifespan has increased significantly for people living with cystic fibrosis (CF). However, several studies have demonstrated that many young adults with CF report mental health problems and poor adherence to their prescribed treatments, challenging their long-term physical health. Treatment guidelines recommend interventions to improve adherence and self-management. The aim of this study was to test the feasibility of a life coaching intervention for young adults with CF. METHODS:A randomized, controlled feasibility study was conducted at the CF Center at Copenhagen University Hospital, Rigshospitalet. Participants were young adults with CF, aged 18-30 years without severe intellectual impairments. Participants were randomized to either life coaching or standard care. The intervention consisted of up to 10 individual, face-to-face or telephone coaching sessions over a period of 1 year. Primary outcomes were recruitment success, acceptability, adherence to the intervention, and retention rates. Secondary outcome measures included health-related quality of life, adherence to treatment, self-efficacy, pulmonary function, body mass index, and blood glucose values. RESULTS:Among the 85 eligible patients approached, 40 (47%) were enrolled and randomized to the intervention or control group; two patients subsequently withdrew consent. Retention rates after 5 and 10 coaching sessions were 67% and 50%, respectively. Reasons for stopping the intervention included lack of time, poor health, perceiving coaching as not helpful, lack of motivation, and no need for further coaching. Coaching was primarily face-to-face (68%). No significant differences were found between the groups on any of the secondary outcomes. CONCLUSION:Both telephone and face-to-face coaching were convenient for participants, with 50% receiving the maximum offered coaching sessions. However, the dropout rate early in the intervention was a concern. In future studies, eligible participants should be screened for their interest and perceived need for support and life coaching before enrollment.

Project description:BACKGROUND:As a result of demographic changes, the number of people aged 60 years and older has been increasing steadily. Therefore, older adults have become more important as a target group for health communication efforts. Various studies show that online health information sources have gained importance among younger adults, but we know little about the health-related internet use of senior citizens in general and in particular about the variables explaining their online health-related information-seeking behavior. Media use studies indicate that in addition to sociodemographic variables, lifestyle factors might play a role in this context. OBJECTIVE:The aim of this study was to examine older people's health-related internet use. Our study focused on the explanatory potential of lifestyle types over and above sociodemographic variables to predict older adults' internet use for health information. METHODS:A telephone survey was conducted with a random sample of German adults aged 60 years and older (n=701) that was quota-allocated by gender, age, educational status, and degree of urbanity of their place of residence. RESULTS:The results revealed that participants used the internet infrequently (mean 1.82 [SD 1.07]), and medical personnel (mean 2.89 [SD 1.11]), family and friends (mean 2.86 [SD 1.21]), and health brochures (mean 2.85 [SD 1.21]) were their main sources of health information. A hierarchical cluster analysis based on values, interests, and leisure time activities revealed three different lifestyle types for adults aged over 60 years: the Sociable Adventurer, the Average Family Person, and the Uninterested Inactive. After adding these types as second-step predictors in a hierarchical regression model with sociodemographic variables (step 1), the explained variance increased significantly (R2=.02, P=.001), indicating that the Average Family Person and the Sociable Adventurer use the internet more often for health information than the Uninterested Inactive, over and above their sociodemographic attributes. CONCLUSIONS:Our findings indicate that the internet still plays only a minor role in the health information-seeking behavior of older German adults. Nevertheless, there are subgroups including younger, more active, down-to-earth and family-oriented males that may be reached with online health information. Our findings suggest that lifestyle types should be taken into account when predicting health-related internet use behavior.

Dataset Information

Results from an online survey of adults with cystic fibrosis: Accessing and using life expectancy information.

Publications

Results from an online survey of adults with cystic fibrosis: Accessing and using life expectancy information.

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