Assessing psychological and supportive care needs in glioma patients - feasibility study on the use of the Supportive Care Needs Survey Short Form (SCNS-SF34-G) and the Supportive Care Needs Survey Screening Tool (SCNS-ST9) in clinical practice

Renovanz, Mirjam; Hickmann, Anne‐Katrin; Coburger, Jan; Kohlmann, Karoline; Janko, Mareile; Reuter, Ann Katrin; Keric, Naureen; Nadji-Ohl, Minou; König, Jochem; Schnittger, Susanne; Giese, Alf; Hechtner, Marlene

doi:10.1111/ecc.12598

Cited by 28 publications

(33 citation statements)

References 53 publications

(96 reference statements)

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“…In clinical trials for brain cancer patients, QOL form completion can be poor, with either no form completed or missing items (Dirven et al, 2014;Walker et al, 2003). A recent study in Germany with patients diagnosed with glioma highlighted that even with support in clinics up to 10% of participants erroneously completed the SCNS-34 and this rises to 20% without support (Renovanz et al, 2016). They highlighted structure and comprehension as contributing factors but also noted that if patients were distressed more errors occurred.…”

Section: Discussionmentioning

confidence: 99%

Holistic needs assessment in brain cancer patients: A systematic review of available tools

et al. 2018

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This systematic review describes tools which could be considered for use for holistic needs assessment (HNA) in brain cancer. MEDLINE, Cumulative Index to Nursing and Allied Health Literature (CINAHL) and PsycINFO were searched. Studies were included which met the following criteria; primary research published in English which reported the development, psychometric testing or clinical utility testing of patient‐reported outcome measures (PROMs) for the assessment of adult brain cancer patients’ needs, problems or concerns or generic cancer needs assessment tools developed specifically on a brain cancer or brain tumour population. Nine articles describing four tools were identified. The tools were first assessed using the COSMIN protocol for systematic reviews of measurement properties and then assessed for their quality and usefulness as a holistic needs assessment tool. None of the four tools had strong psychometric properties; however, the two symptom questionnaires had better psychometric properties but would need adapted to holistically assess the multiple domains of need. The two HNA tools had only minimal psychometric testing. The lack of a tool, which adequately meets all requirements for HNA, supports the need to further development of tools to optimise this intervention.

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Section: Discussionmentioning

confidence: 99%

Holistic needs assessment in brain cancer patients: A systematic review of available tools

et al. 2018

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“…We conducted several observational studies before that led to the research question of the GLIOPT trial. Hereby we found that 1) some questionnaires do not fit to the requirements of HGG patients (6,11), 2) patients in reduced clinical condition with high unmet needs may be missed by a questionnaire or tablet assessment (8,12) and 3) we can use "signaling items" probably indicating patients in need of support (13). Applying these items in a face-to-face conversation of doctor and patient was possible.…”

Section: Preliminary Workmentioning

confidence: 95%

Glioma patients in outpatient care - Optimization of psychosocial care in neuro-oncological patients (GLIOPT): Protocol for a cluster randomized controlled trial.

Renovanz

Hippler²,

Voss

et al. 2020

Preprint

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Background: Patients with high-grade gliomas (HGG) often suffer from high distress and require psychosocial support. However, due to neurological and neurocognitive deficits, adequate assessment of distress and support needs remains a challenging unmet clinical need. The objective of the present study is to investigate whether a systematic implementation of signaling questions into the routine outpatient consultation will be helpful to bridge this gap.Methods and design:This is a multicenter cluster randomized study with two arms. Randomization is done on a cluster level with 13 hospitals providing regular neuro-oncological outpatient services conducted by neurologists and/or neurosurgeons. The intervention will include an assessment of psychosocial distress of patients in doctor-patient-conversation compared to assessment of psychosocial distress via questionnaire (control, standard of care). In total, 616 HGG patients will be enrolled. The outcome will be the number of HGG patients with increased psychosocial distress who receive professional support from psychosocial services. Secondary endpoints are inter alia number of patients reporting psychosocial distress and unmet needs detected correctly by the respective method; quality of life; psychological well-being and burden of the patients before and after doctor-patient consultation as well as the length of the doctor-patient-consultation. Discussion: Patients with HGG are confronted with an oncological diagnosis and at the same time with high symptom burden. This often leads to distress, which is not always adequately recognized and treated. So far, only a limited number of adequate instruments are available to assess HGG patient's distress. Yet, an adequate care and support network might facilitate the course of the disease and tumor therapies for patients. Our hypothesis is that an assessment conducted directly by attending doctors and in which the doctors talk to patients with HGG will be more effective than an assessment via a questionnaire, leading to better identifying patients in need for support. This may lead to an improvement of health care in these patients. Further, this method might be implemented also in other brain tumor patients (e.g. patients with brain metastases).Trial registration: Register: German Clinical Trials Register, registration number: DRKS00018079Registration date: 3rd September 2019, URL: http://www.drks.de/DRKS00018079

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Section: Preliminary Workmentioning

confidence: 96%

“…However, screening instruments have been rarely adapted to the diverse needs of neuro-oncological patients so far (6)(7)(8).…”

Section: Introductionmentioning

confidence: 99%

“…Especially as HGG patients suffer from neurocognitive deficits during their disease trajectory caused by the disease itself and the treatment, they may not always be able to complete the questionnaires (6,9,10). Therefore, either adaption of instruments to the needs of neuro-oncological patients or alternative assessment approaches are required.…”

Section: Introductionmentioning

confidence: 99%

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STUDY PROTOCOL Glioma patients in outpatient care - Optimization of psychosocial care in neuro-oncological patients (GLIOPT): study protocol of a multicenter cluster randomized controlled trial

Renovanz

Hippler²,

Voss

et al. 2020

Preprint

View full text Add to dashboard Cite

Background: Patients with high-grade gliomas (HGG) often suffer from high distress and require psychosocial support. However, due to neurological and neurocognitive deficits, adequate assessment of distress and support needs remains a challenging unmet clinical need. The objective of the present study is to investigate whether a systematic implementation of signaling questions into the routine outpatient consultation will be helpful to bridge this gap.Methods and design : This is a multicenter cluster randomized study with two arms. Randomization is done on a cluster level with 13 hospitals providing regular neuro-oncological outpatient services conducted by neurologists and/or neurosurgeons. The intervention will include an assessment of psychosocial distress of patients in doctor-patient-conversationcompared to assessment of psychosocial distress via questionnaire (control, standard of care). In total, 616 HGG patients will be enrolled. The outcome will be the number of HGG patients with increased psychosocial distress who receive professional support from psychosocial services. Secondary endpoints are inter alia number of patients reporting psychosocial distress and unmet needs detected correctly by the respective method; quality of life; psychological well-being and burden of the patients before and after doctorpatient consultation as well as the length of the doctor-patient-consultation.Discussion: Patients with HGG are confronted with an oncological diagnosis and at the same time with high symptom burden. This often leads to distress, which is not always adequately recognized and treated. So far, only a limited number of adequate instruments are available to assess HGG patient's distress. Yet, an adequate care and support network might facilitate the course of the disease and tumor therapies for patients. Our hypothesis is that an assessment conducted directly by attending doctors and in which the doctors talk to patients with HGG will be more effective than an assessment via a questionnaire, leading to better identifying patients in need for support. This may lead to an improvement of health care in these patients. Further, this method might be implemented also in other brain tumor patients (e.g. patients with brain metastases).

show abstract

Assessing psychological and supportive care needs in glioma patients - feasibility study on the use of the Supportive Care Needs Survey Short Form (SCNS-SF34-G) and the Supportive Care Needs Survey Screening Tool (SCNS-ST9) in clinical practice

Cited by 28 publications

References 53 publications

Holistic needs assessment in brain cancer patients: A systematic review of available tools

Holistic needs assessment in brain cancer patients: A systematic review of available tools

Glioma patients in outpatient care - Optimization of psychosocial care in neuro-oncological patients (GLIOPT): Protocol for a cluster randomized controlled trial.

STUDY PROTOCOL Glioma patients in outpatient care - Optimization of psychosocial care in neuro-oncological patients (GLIOPT): study protocol of a multicenter cluster randomized controlled trial

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