IT-based Psychosocial Distress Screening in Patients with Sarcoma and Parental Caregivers via Disease-specific Online Social Media Communities

Pohlig, Florian; Lenze, Ulrich; Mühlhofer, Heinrich; Lenze, Florian; Schauwecker, Johannes; Knebel, Carolin; Zimmermann, Tanja; Herschbach, Peter

doi:10.21873/invivo.11081

Cited by 15 publications

(10 citation statements)

References 33 publications

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“…Distress levels in more than 40% of patients with soft-tissue sarcomas reached the cut-off value, indicating the need for psycho-oncological treatment (7). Recently, Pohlig et al reported the results of their social-media-based cancerspecific online survey on distress levels in patients with osteosarcoma and Ewing's sarcoma (27). Distress in all of the included patients (n=28) reached the defined cut-off value in their study.…”

Section: Discussionmentioning

confidence: 92%

“…Distress in all of the included patients (n=28) reached the defined cut-off value in their study. A potential selection bias, however, was acknowledged, as distressed patients are probably more likely to participate in patient communities of social networks (27).…”

Section: Discussionmentioning

confidence: 99%

“…Accordingly, almost one half of the patients participating in our study were of working age and the majority reported highest levels of distress in the psychological dimension, such as anxiety. One major challenge is that only few patients with psychosocial distress are detected at an early phase of their disease, which might be explained by the low correlation between objective characteristics of the disease and the subjective perception of each patient (13,16,27). Despite these difficulties, many clinicians do not routinely ask patients with cancer about psychosocial problems but rely on their own clinical judgement.…”

Section: Discussionmentioning

confidence: 99%

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Standardized Screening and Psycho-oncological Treatment of Orthopedic Cancer Patients

Lenze

Kirchhoff

Pohlig

et al. 2018

In Vivo

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Section: Discussionmentioning

confidence: 92%

Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Standardized Screening and Psycho-oncological Treatment of Orthopedic Cancer Patients

Lenze

Kirchhoff

Pohlig

et al. 2018

In Vivo

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“…In a heterogeneous sample of 1,721 patients, participants with soft-tissue tumours accounted for the highest proportion of distressed patients, with 40% having scores exceeding the cut-off value and requiring psychosocial support. Pohlig et al conducted a social media-based cancer-specific survey in a young cohort of patients with bone sarcomas, and all enrolled patients had scores which exceeded the cut-off value (26). Due to the study design employed, a certain selection bias was assumed because distressed patients are probably more likely to participate in patient communities of social networks (26).…”

Section: Discussionmentioning

confidence: 99%

Psychosocial Distress in Follow-up Care – Results of a Tablet-based Routine Screening in 202 Patients With Sarcoma

et al. 2019

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Background: Patients with sarcoma are particularly vulnerable to psychosocial distress. The aim of this study was to collect preliminary data on the prevalence of psychosocial distress in such patients during follow-up care and identify risk factors associated with higher psychooncological stress levels. Patients and Methods: The study retrospectively enrolled 202 patients with bone or soft-tissue sarcomas who underwent routine psychosocial distress screening during their follow-up care. All patients were screened using an electronic cancer-specific questionnaire. Results: Females and patients who underwent radiotherapy were more distressed. Psychosocial distress levels were markedly higher in the early postoperative phase, but approximately one-third of patients showed high psychosocial distress levels even more than 2 years postoperatively. Conclusion: The results underscore the importance of routine psychosocial distress screenings in patients with sarcoma, which should be performed throughout the follow-up period.Approximately 30-66% of all patients with cancer suffer from psychosocial distress during the course of their disease, which constitutes a relevant clinical and economical problem (1-4). However, treatment of such patients is still mainly focused on biomedical aspects. Studies on psychosocial distress in patients with cancer have shown that the identification of distressed patients is a considerable challenge (5,6). This difficulty might be attributed to the weak correlation between objective disease characteristics/symptoms and the subjective perception of distress of patients with cancer (5-8). Additionally, many patients feel discomfort when talking about mental health issues, and approximately 25% speak about their mental concerns only when invited to do so (9). International guidelines suggest routine distress screening for all patients with cancer, and such screening is one of the certification requirements for cancer centres (7, 10). In this context, we implemented routine psychosocial distress screenings for all patients with cancer at our Orthopaedic University Department.Malignant tumours of the musculoskeletal system are rare, comprising only 1% of all malignant tumours (11). Despite improvements in therapy and increased survival rates, patients with musculoskeletal malignancies, such as softtissue sarcomas, are particularly vulnerable to psychosocial distress (12-15). In our experience, high distress levels occur not only at early stages of the disease but also during the follow-up period (even years after the operation) in some patients.Most studies on the prevalence of psychosocial distress in patients with extremity sarcomas use common screening instruments such as the Brief Symptom Inventory (BSI), the Hospital Anxiety and Depression Scale (HADS) or the Depression and Anxiety Stress Scale 21 (DASS 21) (14,(16)(17)(18)(19). These questionnaires, however, are not cancer-specific and mainly assess the prevalence of psychiatric disorders, especially anxiety and depression. In contrast, ca...

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“…Crosier et al [ 26 ] used Facebook to recruit patients with auditory hallucinations; within 6 weeks, over 250 patients had completed this survey. Pohlig et al [ 27 ] concluded that enrollment of patients in prospective studies is time-consuming and could be facilitated by use of crowdsourcing.…”

Section: Discussionmentioning

confidence: 99%

The Patient Perspective on the Impact of Tenosynovial Giant Cell Tumors on Daily Living: Crowdsourcing Study on Physical Function and Quality of Life

Mastboom¹,

Planje²,

Sande³

2018

Interact J Med Res

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BackgroundTenosynovial giant cell tumor (TGCT) is a rare, benign lesion affecting the synovial lining of joints, bursae, and tendon sheaths. It is generally characterized as a locally aggressive and often recurring tumor. A distinction is made between localized- and diffuse-type. The impact of TGCT on daily living is currently ill-described.ObjectiveThe aim of this crowdsourcing study was to evaluate the impact of TGCT on physical function, daily activities, societal participation (work, sports, and hobbies), and overall quality of life from a patient perspective. The secondary aim was to define risk factors for deteriorated outcome in TGCT.MethodsMembers of the largest known TGCT Facebook community, PVNS is Pants!!, were invited to an e-survey, partially consisting of validated questionnaires, for 6 months. To confirm disease presence and TGCT-type, patients were requested to share histological or radiological proof of TGCT. Unpaired t tests and chi-square tests were used to compare groups with and without proof and to define risk factors for deteriorated outcome.ResultsThree hundred thirty-seven questionnaires, originating from 30 countries, were completed. Median age at diagnosis was 33 (interquartile range [IQR]=25-42) years, majority was female (79.8% [269/337]), diffuse TGCT (70.3% [237/337]), and affected lower extremities (knee 70.9% [239/337] and hip 9.5% [32/337]). In 299 lower-extremity TGCT patients (32.4% [97/299]) with disease confirmation, recurrence rate was 36% and 69.5% in localized and diffuse type, respectively. For both types, pain and swelling decreased after treatment; in contrast, stiffness and range of motion worsened. Patients were limited in their employment (localized 13% [8/61]; diffuse 11.0% [21/191]) and sport-activities (localized 58% [40/69]; diffuse 63.9% [147/230]). Compared with general US population, all patients showed lower Patient-Reported Outcomes Measurements Information System-Physical Function (PROMIS-PF), Short Form-12 (SF-12), and EuroQoL 5 Dimensions 5 Levels (EQ5D-5L) scores, considered clinically relevant, according to estimated minimal important difference (MID). Diffuse versus localized type scored almost 0.5 standard deviation lower for PROMIS-PF (P<.001) and demonstrated a utility score of 5% lower for EQ-5D-5L (P=.03). In localized TGCT, recurrent disease and ≥2 surgeries negatively influenced scores of Visual Analog Scale (VAS)-pain/stiffness, SF-12, and EQ-5D-5L (P<.05). In diffuse type, recurrence resulted in lower score for VAS, PROMIS-PF, SF-12, and EQ-5D-5L (P<.05). In both types, patients with treatment ≤1year had significantly lower SF-12.ConclusionsTGCT has a major impact on daily living in a relatively young and working population. Patients with diffuse type, recurrent disease, and ≥2 surgeries represent lowest functional and quality of life outcomes. Physicians should be aware that TGCT patients frequently continue to experience declined health-related quality of life and physical function and often remain limited in daily life, even after treatment...

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IT-based Psychosocial Distress Screening in Patients with Sarcoma and Parental Caregivers via Disease-specific Online Social Media Communities

Cited by 15 publications

References 33 publications

Standardized Screening and Psycho-oncological Treatment of Orthopedic Cancer Patients

Standardized Screening and Psycho-oncological Treatment of Orthopedic Cancer Patients

Psychosocial Distress in Follow-up Care – Results of a Tablet-based Routine Screening in 202 Patients With Sarcoma

The Patient Perspective on the Impact of Tenosynovial Giant Cell Tumors on Daily Living: Crowdsourcing Study on Physical Function and Quality of Life

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