Psychosocial Distress of Patients with Psoriasis: Protocol for an Assessment of Care Needs and the Development of a Supportive Intervention (Preprint)

BACKGROUND Psoriasis is a chronic inflammatory disease that is often associated with a number of somatic and mental comorbidity. Patients with psoriasis show an increased risk of depression and (social) anxiety. OBJECTIVE The aims of this study are 1) to explore the psychosocial distress of patients with psoriasis and to assess their care needs; and 2) to develop a supportive intervention based on the prior results. METHODS A multi-stage design with four phases combining quantitative and qualitative methodology will be used and conducted in two centers. 1) A scoping review and focus groups will be used to design a questionnaire to assess the psychosocial distress and care needs of the patients. 2) The questionnaire developed in phase 1 will be used in a cross-sectional survey to assess the extent of psychosocial distress and supportive care needs in 400 patients with psoriasis. 3) A systematic review and meta-analysis will be conducted to identify psychosocial and psychoeducational interventions for patients with psoriasis and to describe their effectiveness. 4) Based on the results of the phases 2 and 3 a manualized supportive intervention will be developed and the feasibility and acceptance of the intervention will be assessed. RESULTS Currently, phase 1 of the project has been completed and the recruitment for phase 2 has been started. The systematic review and meta-analysis of phase 3 are conducted simultaneously to phase 2 and results are expected soon. Phase 4 has not been started yet. CONCLUSIONS The expected results of this study will show the extent of psychosocial distress of patients with psoriasis in Germany and supplement previous research with findings about the supportive care needs of this patient group. Moreover, the developed intervention will help to address the psychosocial support needs of patients with psoriasis. Research shows that psychosocial support is strongly needed.

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The supportive care needs of people living with pulmonary fibrosis and their caregivers: a systematic review

European Respiratory Review ◽

10.1183/16000617.0125-2019 ◽

2020 ◽

Vol 29 (156) ◽

pp. 190125 ◽

Cited By ~ 6

Author(s):

Joanna Y.T. Lee ◽

Gabriella Tikellis ◽

Tamera J. Corte ◽

Nicole S. Goh ◽

Gregory J. Keir ◽

...

Keyword(s):

Systematic Review ◽

Pulmonary Fibrosis ◽

Supportive Care ◽

Psychosocial Support ◽

A Priori ◽

Synthesis Method ◽

Symptom Burden ◽

Supplemental Oxygen ◽

Supportive Care Needs ◽

Care Needs

BackgroundPeople with pulmonary fibrosis often experience a protracted time to diagnosis, high symptom burden and limited disease information. This review aimed to identify the supportive care needs reported by people with pulmonary fibrosis and their caregivers.MethodsA systematic review was conducted according to PRISMA guidelines. Studies that investigated the supportive care needs of people with pulmonary fibrosis or their caregivers were included. Supportive care needs were extracted and mapped to eight pre-specified domains using a framework synthesis method.ResultsA total of 35 studies were included. The most frequently reported needs were in the domain of information/education, including information on supplemental oxygen, disease progression and prognosis, pharmacological treatments and end-of-life planning. Psychosocial/emotional needs were also frequently reported, including management of anxiety, anger, sadness and fear. An additional domain of “access to care” was identified that had not been specified a priori; this included access to peer support, psychological support, specialist centres and support for families of people with pulmonary fibrosis.ConclusionPeople with pulmonary fibrosis report many unmet needs for supportive care, particularly related to insufficient information and lack of psychosocial support. These data can inform the development of comprehensive care models for people with pulmonary fibrosis and their loved ones.

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The unmet supportive care needs of Chinese patients and caregivers affected by cancer: A systematic review

European Journal of Cancer Care ◽

10.1111/ecc.13269 ◽

2020 ◽

Author(s):

Verena Shuwen Wu ◽

Allan Ben Smith ◽

Afaf Girgis

Keyword(s):

Systematic Review ◽

Supportive Care ◽

Supportive Care Needs ◽

Chinese Patients ◽

Care Needs

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A systematic review of the supportive care needs of people living with and beyond cancer of the colon and/or rectum

European Journal of Oncology Nursing ◽

10.1016/j.ejon.2017.05.004 ◽

2017 ◽

Vol 29 ◽

pp. 60-70 ◽

Cited By ~ 35

Author(s):

Grigorios Kotronoulas ◽

Constantina Papadopoulou ◽

Kathryn Burns-Cunningham ◽

Mhairi Simpson ◽

Roma Maguire

Keyword(s):

Systematic Review ◽

Supportive Care ◽

Supportive Care Needs ◽

Care Needs

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Understanding the supportive care needs of early-phase cancer clinical trial (CT) participants.

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.29_suppl.26 ◽

2020 ◽

Vol 38 (29_suppl) ◽

pp. 26-26

Author(s):

Debra Lundquist ◽

Dejan Juric ◽

Rachel Jimenez ◽

Virginia Capasso ◽

Casandra McIntyre ◽

...

Keyword(s):

Supportive Care ◽

Early Phase ◽

Poor Prognosis ◽

Phase 1 ◽

Supportive Care Needs ◽

Care Needs ◽

Targeted Interventions ◽

Care Services ◽

Patient Reported ◽

Prognosis Score

26 Background: Early phase CTs investigate novel therapeutic approaches for patients with cancer, but little is known about the use of supportive care services among participants in early phase CTs. Methods: We conducted a retrospective chart review of consecutive patients enrolled in Phase 1 CTs from 2017-2019, capturing sociodemographics, clinical data, and use of supportive care services from the electronic health record. We calculated the Royal Marsden Hospital (RMH) prognostic score using data at the time of CT trial enrollment based on patients’ lactate dehydrogenase, albumin, and number of sites of metastasis. The RMH score ranges from 0-3, with scores of 2+ indicating a poor prognosis. We explored differences in patient characteristics, supportive care use, and clinical outcomes based on the RMH prognosis score. Results: Among 426 patients treated on Phase 1 CTs during the study period, the median age was 63.0 years (range 20.5-85.2 years), and most were female (56.1%), white race (85.1%), and had metastatic cancer (97.7%). The most common cancer types were gastrointestinal (22.1%), lung (20.0%), and breast (10.6%) cancer. Under half (31.6%) had an RMH score indicating a poor prognosis. Patients with a poor prognosis score had a worse performance status (ECOG ≥1: 80.2% v 58.3%, p < .001) and more prior treatment (3+ prior lines: 49.5% v 35.0%, p = .001) compared to those without a poor prognosis score. Those with a poor prognosis score were more likely to receive palliative care before or during CT participation (40.5% v 27.1%, p = .011). We observed no significant differences in the rates of nutrition (69.1% v 64.0%), social work (62.2% v 63.8%), or physical therapy (64.5% v 61.7%) consults between those with and without a poor prognosis score. We found that those with an RMH score indicating a poor prognosis had a shorter time on trial (median: 49 vs 87 days, p < .001) and worse survival (median: 139 v 379 days, p < .001). Conclusions: Early phase CT participants represent an advanced cancer population with unique supportive care needs, and we identified a group with a particularly poor prognosis for whom earlier intervention with supportive care services may be needed. Our findings highlight the need to prospectively examine these characteristics along with patient-reported outcomes to better understand the distinct supportive care needs of this population and guide the development of targeted interventions.

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Systematic review of supportive care needs in patients with primary malignant brain tumors

Neuro-Oncology ◽

10.1093/neuonc/nor229 ◽

2012 ◽

Vol 14 (4) ◽

pp. 392-404 ◽

Cited By ~ 97

Author(s):

E. Ford ◽

S. Catt ◽

A. Chalmers ◽

L. Fallowfield

Keyword(s):

Systematic Review ◽

Brain Tumors ◽

Supportive Care ◽

Supportive Care Needs ◽

Care Needs ◽

Malignant Brain Tumors

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Defining the Supportive Care Needs and Psychological Morbidity of Patients With Functioning Versus Nonfunctioning Neuroendocrine Tumors: Protocol for a Phase 1 Trial of a Nurse-Led Online and Phone-Based Intervention

JMIR Research Protocols ◽

10.2196/14361 ◽

2019 ◽

Vol 8 (12) ◽

pp. e14361

Author(s):

Lisa Guccione ◽

Karla Gough ◽

Allison Drosdowsky ◽

Krista Fisher ◽

Timothy Price ◽

...

Keyword(s):

Supportive Care ◽

Qualitative Data ◽

Phase 1 ◽

Patient Experiences ◽

Specific Information ◽

Pilot Test ◽

Phase 2 ◽

Care Needs ◽

Phase 3 ◽

Disease Specific

Background Online information resources and support have been demonstrated to positively influence the well-being of people diagnosed with cancer. This has been explored in past literature for more common cancers; however, for rare cancers, such as neuroendocrine tumors (NETs), there are little to no support or resources available. Despite relatively good prognoses, the quality of life (QoL) of patients with NETs is significantly lower compared with samples of mixed cancer patients and the general population. Patients with NETs also typically report unclear and difficult pathways of disease management and treatment, given the heterogeneity of the diagnosis. There is a vital need to improve the availability of disease-specific information for this patient group and provide supportive care that is tailored to the unique needs of the NET patient population. Objective This study described the protocol of a study aimed to better understand the outcomes and experiences of patients diagnosed with NETs and to develop and pilot test a nurse-led online and phone-based intervention that will provide tailored supportive care targeted to NET subgroups (functioning vs nonfunctioning). Methods This is a multisite cohort with 3 phases, incorporating both quantitative and qualitative data collection. Phase 1 is a mixed methods prospective cohort study of NET patients identifying differences in patient experiences and priority of needs between NET subgroups. Phase 2 utilizes results from phase 1 to develop an online and nurse-led phone-based intervention. Phase 3 is to pilot test and evaluate the intervention’s acceptability, appropriateness, and feasibility. Results Currently, the project is progressing through phase 1 and has completed recruitment. A total of 138 participants have been recruited to the study. To date, patient-reported outcome data from 123 participants at baseline and 87 participants at 6-month follow-up have been collected. Of these, qualitative data from semistructured interviews from 35 participants have also been obtained. Phase 2 and phase 3 of the project are yet to be completed. Conclusions Limited research for patients with NETs suggests that QoL and patient experiences are significantly impaired compared with the general population. Furthermore, past research has failed to delineate how the clinical variability between those with functioning and nonfunctioning NETs impacts patient supportive care needs. This study will improve on the availability of disease-specific information as well as informing the design of a nurse-led online and phone-based supportive care intervention tailored for the unique needs of the NET patient population. International Registered Report Identifier (IRRID) DERR1-10.2196/14361

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