Patients with precursor disease exhibit similar psychological distress and mental HRQOL as patients with active myeloma

Maatouk, Imad; He, Susanne; Hummel, Manuela; Hemmer, Stefan; Hillengaß, Michaela; Goldschmidt, Hartmut; Hartmann, Mechthild; Herzog, Wolfgang; Hillengaß, Jens

doi:10.1038/s41408-019-0172-1

Cited by 21 publications

(23 citation statements)

References 13 publications

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“…In a recent German study, the researchers collected questionnaires from 552 patients with MM from a large myeloma center in Germany over the course of 3 years. 21 An identical study was offered through the HealthTree Cure Hub and accumulated questionnaires from 678 patients with MM in just 3 months. Because of the nature of our patient population, this study received research data from individuals with diverse social backgrounds, different races, and treated in different areas of the country, which made these data far more representative than other data collections.…”

Section: Discussionmentioning

confidence: 99%

HealthTree Cure Hub: A Patient-Derived, Patient-Driven Clinical Cancer Information Platform Used to Overcome Hurdles and Accelerate Research in Multiple Myeloma

Sweeney¹,

Ahlstrom²,

Davies

et al. 2022

JCO Clinical Cancer Informatics

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PURPOSE The study of rare diseases, such as multiple myeloma (MM), often experiences unique research hurdles that can delay or prevent lifesaving discoveries. HealthTree Cure Hub is a first-in-class software program designed to overcome these potential research hurdles. METHODS We assessed whether HealthTree Cure Hub improved four commonly experienced research hurdles such as (1) small numbers of patient accrual to clinical trials and research studies, (2) shallow and isolated data sets, (3) high costs to answer research questions, and (4) lack of long-term follow-up patient data. RESULTS As of June 2021, HealthTree Cure Hub, with its unique portal features, has attracted 9,225 patients with MM and diverse demographic backgrounds. While completing an online health profile, patients shared comprehensive data, as well as provided consent to contribute data from electronic medical records. Portal use answered research questions using patient-driven real-world data. This also cultivated relationships with patients and established communication channels that enabled continual patient contact to allow for long-term follow-up. CONCLUSION These results suggest that a patient-driven data capture tool such as HealthTree Cure Hub will help alleviate common research hurdles, which, in turn, will accelerate MM research, develop new hypotheses, and ultimately improve survival.

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Section: Discussionmentioning

confidence: 99%

HealthTree Cure Hub: A Patient-Derived, Patient-Driven Clinical Cancer Information Platform Used to Overcome Hurdles and Accelerate Research in Multiple Myeloma

Sweeney¹,

Ahlstrom²,

Davies

et al. 2022

JCO Clinical Cancer Informatics

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“…Studies investigating the quality of life of patients with haematological precancerous conditions is limited. Recent quantitative cross-sectional research on MGUS and smouldering multiple myeloma (another higher risk MM precursor) has indicated that these patients exhibit similar psychological distress and mental health-related quality of life (HRQoL) as patients with active MM (cancer) (Maatouk et al, 2019).…”

Section: Introductionmentioning

confidence: 99%

Patient's perspectives of living with a precancerous condition: Monoclonal gammopathy of undetermined significance (MGUS)

Murphy

McShane

Santin

et al. 2021

European Journal of Oncology Nursing

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“…According to the literature patients with potentially malignant conditions associated with the development of malignant melanoma report that the period of conservative management or ‘watchful waiting’ has a significant impact on the psychological well‐being and quality of life of patients with authors strongly recommending the psychological assessment of patients with these potentially malignant conditions 5 . Patients undergoing investigative procedures of suspected colorectal cancer symptoms experienced anxiety as well as fear and worries regarding a threat to their health 6 .…”

Section: Introductionmentioning

confidence: 99%

Psychosocial impacts of oral epithelial dysplasia

Alsoghier

Ríordáin

Fedele

et al. 2021

J Oral Pathology Medicine

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Background The psychosocial impact of receiving the diagnosis of oral epithelial dysplasia, which presents up to 3.5% increased annual risk of mouth cancer, remains unknown. Using validated instruments, the present study aimed to investigate the prevalence and existing correlations between anxiety, depression and dental anxiety symptoms and burden on oral health‐related quality of life. Methods A clinical cohort of 82 patients with oral dysplasia was asked to complete the Hospital Anxiety and Depression Scale, the Modified Dental Anxiety Scale and the shortened version of the Oral Health Impact Profile. Spearman's correlation coefficient and regression analyses were performed. Results The participants’ scores were in keeping with the presence of anxiety, depression and emotional distress symptoms in 30%, 16% and 26%, respectively. However, 69% experienced anxiety related to procedures that may be required as part of long‐term management of oral dysplasia (e.g. local anaesthetic injection). The oral health‐related quality of life scores showed 41.5% reporting a recent daily problem due to their oral or dental health. Significant correlations [p >0.05] were found among and between all of the used instruments. Being a female with oral dysplasia also predicted increased odds of indicating higher anxiety and dental anxiety scores than males [p >0.05]. Conclusion Oral dysplasia can adversely impact on the psychosocial well‐being of affected persons. Establishing a causal relationship between the measured variables may, however, be challenging and would need further longitudinal studies.

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Patients with precursor disease exhibit similar psychological distress and mental HRQOL as patients with active myeloma

Cited by 21 publications

References 13 publications

HealthTree Cure Hub: A Patient-Derived, Patient-Driven Clinical Cancer Information Platform Used to Overcome Hurdles and Accelerate Research in Multiple Myeloma

HealthTree Cure Hub: A Patient-Derived, Patient-Driven Clinical Cancer Information Platform Used to Overcome Hurdles and Accelerate Research in Multiple Myeloma

Patient's perspectives of living with a precancerous condition: Monoclonal gammopathy of undetermined significance (MGUS)

Psychosocial impacts of oral epithelial dysplasia

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