Dataset Information

Identifying specific needs in adult cystic fibrosis patients: a pilot study using a custom questionnaire.

ABSTRACT:

Background

Adult patients with cystic fibrosis (CF) experience daily physical symptoms and disabilities that can be challenging to address for health care teams.

Methods

We sought to identify the most frequent topics that CF adults need to discuss with health care teams using a custom questionnaire including 62 items.

Results

Fifty patients were included, 70% men, mean age 27.6 years, with a mean body mass index of 21.8 kg/m². Mean FEV₁% was 64% of predicted value. Forty-two percent of patients selected at least one topic. The most frequently selected topics were fatigue (20%), professional or scholar worries (18%), procreation (16%), physical activities (16%) and evolution of CF disease (16%). Women were more frequently concerned about fatigue, procreation and profession/school.

Conclusions

Using a custom questionnaire, we identified that CF adults express various unmet needs that extend beyond usual respiratory and nutritional concerns or treatment adherence. The interest of this questionnaire by health care team for improving therapeutic management of CF patients remains to be validated.

Trial registration

The study was registered on ClinicalTrials.gov (NCT02924818) on 5th October 2016.

SUBMITTER: Dury S

PROVIDER: S-EPMC8371823 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Cystic fibrosis (CF) is a disease in which nutritional barriers are diverse and common, with malnutrition greatly influencing pulmonary trajectory and overall outcomes. Despite this, the most effective methods to optimize CF nutrition are unknown, and literature describing patients' perspectives on their specific nutritional needs is lacking, particularly in the modern era of CF care. This study aimed to identify the most important nutritional needs and desired health-improvement resources in a contemporary adult CF cohort. A 14-question investigator-designed survey addressing nutrition concerns, preferred health-improvement resources, and dietary/exercise routines was administered to CF adults. Clinical characteristics and survey responses are presented with descriptive statistics, and responses compared by body mass index (BMI) category (<18.5 kg/m2; 18.5-24.99 kg/m2; 25-29.99 kg/m2; ≥30 kg/m2), gender, and socioeconomic status using Chi square or Fisher's Exact testing. Of 66 total patients, nine (13.6%) were underweight (BMI <18.5 kg/m2), while 19 (28.8%) were overweight or obese (BMI ≥ 25kg/m2). In the overall cohort, the most common primary concern was preventing weight loss [in 20/66 patients (30.3%)], but there were significant differences by BMI (p< 0.001), with the most common concern in the overweight subgroup being preventing weight gain. Fifteen (46.9%) men (BMI mean 20.7, range 16.4-29.2 kg/m2) listed preventing weight loss as the primary concern, compared to only 5 (14.7%) women (BMI mean 18.4, range 16.2-19.9 kg/m2), representing a trend toward a difference in primary concerns by gender (p=0.066).The most commonly desired health-improvement resource was online CF nutrition and fitness information, found in 26 patients (39.4%) in the overall cohort, without significant differences by BMI (p=0.814) or gender (p=0.199). Financial assistance was the preferred resource in 17 (26.2%), without differences by socioeconomic status (p=0.367). We identified a wide variety of nutritional needs in CF adults, including a high prevalence of overweight status, many patients desiring weight loss, and many seeking financial resources. Our findings support the individualization of modern-day CF nutrition programs and development of online resources, in an effort to address the heterogeneous barriers that exist in the contemporary CF population and improve outcomes in patients with the disease.