Health-related quality of life and fatigue in adult rare bone disease patients: A cross-sectional study from Austria

Behanova, Martina; Medibach, Amadea; Haschka, Judith; Kraus, Daniel; Raimann, Adalbert; Mindler, Gabriel T.; Zwerina, Jochen; Kocijan, Roland

doi:10.1016/j.bone.2024.117034

Cited by 2 publications

(4 citation statements)

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“…However, this is not consistent with the results of our study. Despite the previously reported reduced health-related quality of life in RBDs, especially regarding the physical components, compared with osteoporosis patients and healthy controls and despite severe fatigue being found in approximately one-third of RBD patients and one-fourth of osteoporotic patients, only a minority of patients consulted an alternative medicine provider [ 4 ].…”

Section: Discussionmentioning

confidence: 99%

“…CON subjects were individuals who had either got surgery clearance for routine operations, inpatients (e.g., gynecological and ear–nose–throat operations) or volunteers from the general population (hospital staff, hospital visitors or family members). More details on study population including history of fractures and quality of life were recently published elsewhere [ 4 ].…”

Section: Methodsmentioning

confidence: 99%

“…Rare bone diseases (RBDs), such as osteogenesis imperfecta (OI), X-linked hypophosphatemia (XLH) and hypophosphatasia (HPP), are characterized by fractures, pseudo-fractures, bone deformities, musculoskeletal pain, impaired mobility and extraskeletal manifestations [ 1 , 2 , 3 ]. Consequently, the mental and, even more, physical quality of life (QoL) is reduced [ 4 ]. In recent years, specific therapies have been introduced for RBDs.…”

Section: Introductionmentioning

confidence: 99%

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Use of Complementary and Alternative Medicine in Patients with Rare Bone Diseases and Osteoporosis

Kocijan,

Medibach,

Lechner

et al. 2024

Nutrients

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(1) Background: The use of complementary and alternative medicine (CAM) has seen a notable increase in popularity. However, there is an absence of data regarding the prevalence of CAM use in patients with rare bone diseases (RBDs). (2) Methods: This monocentric, cross-sectional study was carried out in a reference hospital for RBDs. RBD patients included individuals with osteogenesis imperfecta, hypophosphatasia and X-linked hypophosphatemia, and their data were compared with those of patients with osteoporosis (OPO) and of healthy controls (CON). This study utilized the German version (I-CAM-G) of the I-CAM questionnaire. (3) Results: This study comprised 50 RBD patients [mean age (SD) of 48.8 (±15.9), 26% male], 51 OPO patients [66.6 (±10.0), 9.8% male] and 52 controls [50.8 (±16.3), 26.9% male]. Treatments by naturopaths/healers were more prevalent in the RBD group (11.4%) compared with OPO (0%) and CON (5.8%) (p = 0.06). More than half of the OPO (60.8%) and CON (63.5%) patients and 46% of the RBD patients reported vitamin/mineral intake within the past 12 months (p = 0.16). Individuals with tertiary education had a significantly higher odds ratio of 2.64 (95% CI: 1.04–6.70, p = 0.04) for visiting any CAM provider. Further, OPO patients were significantly less likely to use self-help techniques compared with the CON group (OR = 0.42, 95% CI: 0.19–0.95; p = 0.04). (4) Conclusions: Herbal medicine, vitamin and mineral supplements, and self-help techniques were the most common forms of CAM reported by patients with RBDs. However, the use of CAM was generally low.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Use of Complementary and Alternative Medicine in Patients with Rare Bone Diseases and Osteoporosis

Kocijan,

Medibach,

Lechner

et al. 2024

Nutrients

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“…Rare bone diseases (RBD), including X-linked hypophosphatemia (XLH), osteogenesis imperfecta (OI) and hypophosphatasia (HPP), are associated with numerous complications such as (pseudo-)fractures, chronic pain and limitations of physical functioning [ 1 , 2 , 3 ]. These factors, among others, lead to a decreased quality of life in patients with RBD [ 4 ]. To date, there is no cure for these diseases, and the available therapeutic options are limited [ 5 , 6 , 7 ].…”

Section: Introductionmentioning

confidence: 99%

Nutritional Behavior of Patients with Bone Diseases: A Cross-Sectional Study from Austria

Kraus,

Medibach,

Behanova

et al. 2024

Nutrients

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Background: A balanced diet rich in calcium and protein is recommended for bone-healthy people and osteoporosis patients, but it may also be important for rare bone disease (RBD). Little data is available on RBD and diet. Therefore, the aim of this study was to evaluate the nutritional behavior of patients with RBD. Methods: This single-center, cross-sectional, questionnaire-based study assessed the nutritional behavior of RBD patients (X-linked hypophosphatemia (XLH), osteogenesis imperfecta (OI), hypophosphatasia (HPP)), osteoporosis (OPO) patients and healthy controls (CTRL). The nutritional questionnaire comprised 25 questions from seven nutritional areas. The associations between socioeconomic factors and BMI were assessed by age-adjusted univariate analysis of covariance (ANCOVA). Results: Fifty patients with RBD (17 OI, 17 HPP, 16 XLH; mean age of 48.8 ± 15.9, 26.0% male, mean BMI 26.2 ± 5.6), 51 with OPO (mean age 66.6 ± 10.0, 9.8% male, mean BMI 24.2 ± 3.9) and 52 CTRL (mean age 50.8 ± 16.3, 26.9% male, mean BMI 26.4 ± 4.7) participated. Twenty-six (52.0%) RBD, 17 (33.4%) OPO and 24 (46.1%) CTRL were overweight or obese according to BMI. Only a minority of RBD, OPO and CTRL had a daily intake of at least three portions of milk or milk products (17.3% RBD, 15.6% OPO, 11.6% CTRL, p = 0.453). In general, similar nutritional behavior was observed between the three subgroups. However, significant differences were found in caffeine consumption (p = 0.016), fruit/vegetable juice consumption (p = 0.034), portions of fish per week (p = 0.044), high-fat meals per week (p = 0.015) and consumption of salty snacks (p = 0.001). Conclusion: Nutritional counseling, controlling BMI and ensuring sufficient calcium and protein intake are crucial in patients with osteoporosis as well as in rare bone diseases. Vitamin D does not appear to be sufficiently supplied by the diet, and therefore supplementation should be considered in patients with bone diseases.

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Health-related quality of life and fatigue in adult rare bone disease patients: A cross-sectional study from Austria

Cited by 2 publications

References 31 publications

Use of Complementary and Alternative Medicine in Patients with Rare Bone Diseases and Osteoporosis

Use of Complementary and Alternative Medicine in Patients with Rare Bone Diseases and Osteoporosis

Nutritional Behavior of Patients with Bone Diseases: A Cross-Sectional Study from Austria

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